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.
_______________________