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Posts Tagged ‘The Speed of Dark’

I love when Jonah’s school sends me photos:

Jonah, my little Boo, connecting his train cars carefully at school

Oh, Jonah.  Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.

Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.

Eye doc number two seems anxious to remove it, and the sooner the better.

Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.

Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience.  The poor kid.  I do research online and pore over articles I can only half-understand even after two or three re-reads.  Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning.  We all need to advocate together.  Andy has long shifts of work now so it takes both of us to figure all this out.

There is more.  Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye.  Now Jonah has drops given to him in both eyes.  I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary.  After that I hate the word they say.  Blind.  I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy.  Mad.

I would never blame Divinity.  I don’t believe God works that way.  I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.”  They are nice things to say but I do not believe them.

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

 ~ Lou Arrendale, the main character.  He has high-functioning autism.

From Elizabeth Moon’s The Speed of Dark

I agree with Lou’s assessment of what God causes and what God doesn’t.

Years ago, before he had uveitis or glaucoma,                    posing with his big brown eyes

What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.

For now I’m going to just enjoy seeing Jonah tomorrow.  He’s been a good boy, they tell us.  Good in school, good at his house.  Good = no aggressions.  Good is what I will focus on.  What you focus on expands, they say.

Focus.  I really meant no pun.  But for now I’m done.

(I didn’t mean to rhyme, either).

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“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said.  Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are.  I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

~ Lou Arrendale in The Speed of Dark by Elizabeth Moon

The Speed of Dark is the only book I can think of that, when I got to the end, I was so disappointed there was no more to read that I just turned back to the beginning and started reading it again.  I’ve re-read it a bunch of times since; it takes place in 2030 or so and its protagonist is Lou, a man with high-functioning autism who must decide whether or not to undergo a new procedure which can make him “normal.”  I got the title of this blog from that book.  I’ve thought a lot about what it is to be “normal,” and what that choice must have been like for Lou.

Sometimes I wonder what Andy and I would do if there was a procedure like that available right now – something that could make Jonah “normal.”  I suppose most people would be surprised that I really don’t know…that it would not be an easy choice…that although I can’t answer for Andy, I actually might not be able to choose to make him “normal.”  And I don’t really even know why.   Maybe it’s because I’ve never had a “normal” child and don’t quite know what kind of mother I’d be to one.

Jonah — the way he is and all that he is —  is all I know.  I suppose if I could have every bit of him except the violence and aggression, that’s what I’d choose.  I don’t know if I want to eliminate the part of him that has autism.  There is something magic in that.  Something pure.  Unassuming.  Uninhibited, nonjudgmental, and innocent.  I’d want to keep all that.

This weekend M has his kids, one boy (N, age 11) and one girl (J, age 6), Jonah aged right in the middle of the two.  I get along fine with both kids but am continually amazed at what they know- how they act – what they say and think and do.   I try to imagine what it would be like if Jonah could be here too…if he were like the other kids.  Would he play with N, since they’re close in age?

What kinds of things would Jonah like to do?  Would he still want to swim and sled and sing?  Would he still like the same things to eat?  What would he be able to say to me?  What subjects would he be best at in school?

I’d have a million questions and no answers.  Nothing new about that…


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