- 14 may 2002 -

Things are okay.  The seizure Amy had two weeks ago was followed by a similar one the next day at about the same time.  I suspect there will be more of them in the future, but hey, it's always something.  What's that phrase? -- Plan for the worst, hope for the best?  I've generally planned for the worst all my life, and that's been handy, but hope, well, it seems to me that hope is a negative element in life.  It's frightfully akin to unreasonable expectation, and oriented toward the specific.  Optimism, on the other hand, is a cousin of hope, the healthy cousin, the athletic one with the tan.  It's more attitude than prospect.

Anyway, thank you for your kind concern in e-mails regarding Amy's well-being.  We're doing well, learning a lot, and getting through it in fairly good spirits.

I've failed to mention that Amy's right ankle has been in a series of casts during the last seven weeks, a therapeutic measure meant to stretch all the stringy bits on the inside of that part of the leg which, over time, loses much of its range of motion because of her spasticity, hypertonicity, and growth.  Her last cast came off yesterday and was replaced by an ankle/foot brace which reaches from her toes almost up to her knee.  It's big and purple with stars and galaxies on it.  It's not exactly camouflaged, so Amy gets to field the comments and questions from schoolmates.  She'll learn something about people, I suppose.  Some of it might even be good.

I'm amazed that she's not depressed about all this.  She's had sad moods after kids have made fun of her, but she weathers them and remains a wonderfully happy kid.  And here's something strange -- for several months she nursed a strong desire to have crutches.  She doesn't need crutches at all.  She walks reasonably well except for a lack of a heel strike with the right foot, but for some reason a pair of crutches struck her as something cool to have.  When she'd saved up enough allowance money, I took her to a local pharmacy and she made the transaction all by herself.  What's terrific about this is that in order to use them properly she has to stretch her right arm and open her right hand so that she can hold and maneuver the right crutch.  And now after two months of practice she can fly on those puppies.  She devised (unknowingly?) a great therapy for herself.

It's funny.  Before she was born, I had all those daddy dreams of what one's own kid will be like.  From the start, I wanted a girl, and I imagined her growing up to become this jazz-dancing piano-playing tomboy bush pilot.  Well, it didn't exactly turn out that way.  But never did I imagine that my only child would have such a winning spirit, that she would enjoy such heart-wrenching triumphs, or that she could have been so truly kind and generous in the face of her kind of adversity.

Can you tell I'm proud?


If ever you want time to go slowly, plan a project.  

If ever you want time to go very slowly, plan an exciting project for the near future.  

If you want time to stand absolutely still, plan a project you suspect will have life-fulfilling qualities, a plan that will affect your demeanor and personality, a plan that you know will soon bring to fruition The Dream, The Real You.

I have such a project.  It is so thrilling to me, so full of style and attitude shift that the Earth has ceased all rotation.  April and May, so far, have felt about nine months long.

This secret project is therapeutic in nature, a mission to go beyond the pull of my life's gravity, much like last year's foray into the world of Highly Stylish Scooting, only bigger, thicker, deeper, ooh.  This new one is so powerful in its character, and it holds such promise of transformation of my sense of self that, frankly, some of the few folks who know about it are a bit frightened.  To be honest, I'm a little frightened myself.  One man, an online journaler and one of only three males on the planet who know the specifics, has expressed a deep gurgling envy.  I'm falling into this with such ease that I fear I'm awakening a sleeping giant within myself and filling him with one helluva good time.  There's a good chance my id will take my ego by the lapels, bitch-slap him, and ask what took him so long.

Is this rude, having a secret project?  Here's why I'm doing it like this.  I'm excited.  But with fruition a couple of months away, to talk about all the details and wonderfulness now with folks in the neighborhood and here in electro-land would remove some of the thrill of the actual tangible surprise of the thing.  Do you know what I mean?  I need to talk about it.  I need to express the excitement I feel.  But if I spill the beans now I'll lose some of the magic come July.  It'll be like, yep, there's them beans, just like you said.  

I needs me my secret magic beans, people.

And yeah, there's probably a control thing going on.  Can you blame me?


Okay.  So things are good.  I'm planning for the worst and giving up hope.  I'm frightened and envied.  It's gonna be a great summer.


  today's music:

"Diamonds On The Soles Of Her Shoes" -- Paul Simon -- GRACELAND


today's wisdom:

"It is the around-the-corner brand of hope that prompts people to action, while the distant hope acts as an opiate."

- Eric Hoffer

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