Friday, July 31, 2009

Hospital Sketches--with apologies to Louisa May Alcott

One of the many joys of parenting hospitalized children is the "chair" that turns into a "bed." In the dark days before the Simpsons, Matt Groening published collections of his Life In Hell comics. "School Is Hell" included a comic entitled "Fun Science Facts" such as "Ringworm is not ringed, nor is it a worm. It is a fungus. A puff adder is not a puff, nor can it add. It is a snake...A fish stick is not fish, nor is it a stick. It is a fungus." The chair bed is not a chair, nor is it a bed. It is a fungus.

Accordingly, I was delighted to observe that T.'s hospital room featured not only a crib and two fungi, but also a real bed--and that we had the room to ourselves. I asked the nurse if I could sleep in the bed and she treated the idea as something incredibly transgressive, but ultimately probably okay. My back thanks me, but my thighs were repeatedly bitten by something in the night. Bitten by an insect that lives in a hospital. I'm trying not to freak out about the possibility of African sleeping sickness, Hanta virus, or MRSA.

It was one of our better hospital stays--but the best day at the hospital is still worse than the worst day at the beach.

T. managed to--in short order--completely remove not one but two intricately wrapped and taped gauze caps designed to prevent him from ripping off the electrodes on his head. We are very proud. Luckily when the tech asked "is he active?" I answered "very active" and thus she attached his electrodes with glue.

Residents on rounds do, in fact, answer questions with the false bravado followed by squirming qualification that one sees on Grey's Anatomy.

I know more about infantile spasms than neurology residents do.

T. is well and has started taking medication. Thanks to all the kind commenters--and to those who had kind thoughts but did not comment--and welcome to new readers.

Tuesday, July 28, 2009

In There

I'm afraid I'm going to end up hating Infinite Jest.

Not because of its length--I'm tripping along slightly ahead of schedule, although I always feel vaguely that I should either be farther ahead or staying with the pack--or its lengthy sentences.

Not because the math--especially the math+politics+game recipe of the Eschaton scene--makes me betray the sisterhood, go all Barbie and squeal "Ew! Boy stuff!"

Not even because I can't bear to see Hal shut down, although that comes close.

It's because of what's going on in my life this summer, which I will forever associate with Infinite Jest. I cannot go to the Olive Garden because when my first college boyfriend broke up with me, we had plans with another couple at the OG that night, and he felt that we should still go and pretend to be still together. I cannot drink vodka or banana-orange juice because...well, I suspect you know why. I hate the smell of hospital receiving blankets because they bring back the stress of T.'s hospitalization.

This summer I found out that my beautiful baby boy T. is blind. It's hard to get this across to health professionals sensitive to the continuum of "visually impaired," etc. but I think one expressive term would be "pretty darn blind." As in, please stop waving that thing around, he really really cannot see it.

And later this summer, this week, I found out that T. is having seizures. Seizures that are highly correlated not only with mental retardation, but also severe behavioral problems in the years to come. The neurologist tells me that quick diagnosis--for which, I think, in his cold doctory way he is trying to give me some credit--and prompt treatment makes for a better prognosis.

I keep thinking about Hal and his "I am in here." I know, with certainty, that T. is in there. Whatever happens, I intend to devote myself to assuring him that we, who love him, know he is in there.

When I go to the hospital today and see my little sweetheart hooked up to the forty-some wires of the EEG, I will be grateful to have a big book to read. I love Hal, and Pemulis, and Mario, and Joelle, and Gately, and I actually kind of like the endnotes, and Eschaton seems like something R. would love even though I can't get into it myself, and I kind of identify with Avril...but I won't want to read this book again.