snowdeal.org > ex machina

ex machina

every so often, in the midst of the flurry of my daily activity on the web, i stumble upon something so direct and honest that it hits me upside the head with a big cluestick. hard.

ned gulley does just that by being brave enough to write about his son jay's pervasive developmental disorder:

"So this is what happened: my wife and I are lucky enough to have a little boy. He is not a normal boy. I can add quotes: he is not a "normal" boy. Or perhaps I should say he is not an ordinary boy. Or: he is not common. It's easy enough to play with the language. But it's damn near impossible to see past everything to the child. Behind the thicket of words, behind the jargon, the diagnoses, programs, forms, appointments, doctors, therapists, and speech pathologists, behind the adjustment to new realities, behind it all there is a boy, a little man, two years four months old. He is not a cute drooling toddler. He is Jay. He is not a darling angelic lost little boy. He is not autistic or developmentally disabled. He is Jay. Then again, he is not Jay. He is the one we mean when we say "Jay". He is himself. He is... well, there he is. He is the one I love. He is my son."

i wish ned well and - at the risk of trivializing the situation - thank him for proving the quote in the sidebar, "In our culture, we're suspicious of strangers. They're a threat. They lurk in shadows. On the Web, however, strangers are the source of everything worthwhile. Strangers and their utterances are the stuff of the Web."

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7/20/2001 11:00:00 PM 0 comments

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[ rhetoric ]

“"it is hard to be brave," said piglet, sniffing slightly, "when you're only a Very Small Animal." rabbit, who had begun to write very busily, looked up and said: "it is because you are a very small animal that you will be Useful in the adventure before us."”

the complete tales & poems of winnie the pooh

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this site chronicles the continuing adventures of my son, odin, who was unexpectedly born on the fourth of july at 25 weeks gestation, weighing 1 pound 7 ounces.

he's quite a fighter and you can always send him a postcard to the most current address listed here if you're inspired by his adventures. see the postcard project/google maps mashup to see a map of the postcards.

if you're new, you can browse the archives to catch up. and don't forget to watch a few movies that i made while we were in the neonatal intensive care unit. or if you want the abridged version and you can find a copy, you can read about his adventures in the november 2005 issue of parents magazine.

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