Girl in a nest - day 15

light recedes, but it's there

Restraint

This business of blogging is strange to me. As the audience grows, the community widens, the bonds are made and some are broken. This is my 794th post, actually, and I love the whole thing, but I'm feeling constrained and, to be honest, restrained. There's the flinch of embarrassment of revelation, the intimacy that might be illusory balanced by the perception that all of us are connected in a way that is near to revolutionary. The restraint, I think, is due on the one hand to my particular personality -- a desire to meet expectation, to live up to ideals -- those placed upon me and those that I place upon myself.

This vacation I'm on, for instance, absolutely sucks.

There, I've said it. I've held it back for almost two weeks. I've held it back because I don't want to sound complaining. I don't want anyone to tell me that I need a tranquilizer (someone actually said that to me). I don't want to watch Sophie seize over and over again, not because she has somehow gotten worse the last two weeks but because I erroneously brought her here and she is having the worst -- and I mean the worst -- time adjusting to everything from the time change to the godawful heat and humidity and east coast thunderstorm/heat lighting barometric pressure thing. She has not been able to walk freely around like she can do at home because it isn't safe here. She has slept horribly for the most part, and I've had to sleep with her every single night, and I hate sleeping with her. I desperately need a break, a real vacation and I'm not getting one any time soon.

I feel like I'm losing, if not completely lost, my spiritual center.

So there.

But I'm a good girl, really. So here's what I'm grateful for:

My husband's week here and his attentiveness to her and her needs.
My sons' joy in being here.
My parents' concern and support. They love me, I know.
My parents' beautiful house that they open up each year to the extended family's crazy shenanigans.
The gorgeous view behind my parents' house, the water snaking up into the distance, live oaks with moss hanging down, white birds in flight.
My dear friends, Cara and Audrey, who have arrived with their children and are hanging out with me, and I mean hanging out because Sophie can't go anywhere or do anything and neither can I.
The fact that I only have one week left to endure and then I get to go home to beautiful, mild, sunny Los Angeles, my politically liberal people, Sophie's comfortable adaptive room and my own bed.
All of you.

Someone tell me something funny.

When Grandma and Pop Pop leave the beach house and go home

(nothing was broken, and Sophie actually enjoyed the bouncing --)

Of course

Those of us with children with special needs and those of us with disease ourselves are probably more prone to looking for signs and symbols in casual events. I know that I am, and from the emails and comments I get on this blog, I know that many of you out there are as well.

I have just finished the novel Tinkers by Paul Harding, a slim and beautiful piece of fiction that won the Pulitzer Prize this year. I don't even want to think about the fact that the book is the first novel published by Mr. Harding, because as much as I'm impressed, overwhelmed even, I'm also madly jealous. Mr. Harding completely deserves the accolades, though, as I found the book beautifully written and deeply moving. The book is short and in often dream-like prose, describes the life and thoughts of a man named George Washington Crosby as he lies dying, an old man with his family surrounding him. Here's the beautiful opening passage:

George Washington Crosby began to hallucinate eight days before he died. From the rented hospital bed, placed in the middle of his own living room, he saw insects running in and out of imaginary cracks in the ceiling plaster. The panes in the windows, once snugly pointed and glazed, stood loose in their sashes. The next stiff breeze would topple them all and they would flop onto the heads of his family, who sat on the couch and the love seat and the kitchen chairs his wife had brought in to accomodate everyone. The torrents of panes would drive everyone from the room, his grandchildren in from Kansas and Atlanta and Seattle, his sister in from Florida, and he would marooned on his bed in a moat of shattered glass. Pollen and sparrows, rain and the intrepid squirrels he had spent half of his life keeping out of the bird feeders would breach the house.

As George hallucinates, we are led backward in time to his childhood and introduced to his hardscrabble life growing up with a taciturn mother, a "simple" brother and two sisters. We are introduced to the voice of his father who suffers -- and here's the OF COURSE moment for me -- from epilepsy. This epilepsy and the terrible seizures his father endures, when a broom stick is shoved into his mouth so that "his tongue will not be bitten off" define George's life. Ignorant of the disorder and advised by the family physican, George's mother decides to admit her husband to an insane asylum, but when he discovers that this will be his fate, the father, the tinker of the title, runs away from his family and takes a new name. I won't disclose any more but urge you to read this beautiful book if you love Faulknerian prose and intensity.

That one of the main characters had epilepsy was obviously moving to me and shed more light on the history of the disorder. It furthered my understanding of the unique horror of seizures but also reinforced my feeling that despite the incredible advances we've made in treating seizures and educating the culture about them, there is still a darkness to epilepsy that is almost primitive, dramatic enough to make for compelling narrative and rich character study. I'm not sure if there isn't almost a romanticizing of the disorder, but I'm certain that mystery and drama is inherent in epilepsy anyway, and it's part of the reason why I just can't seem to "accept" or be at ease when my own daughter has seizures. My own writing has only begun to parse this out, and after reading this novel, I am galvanized to keep at it, trying to unlock the door that leads down the path and through the dark to another door and perhaps, even, light beyond.

Sunday Rapture

     Home is where one starts from. As we grow older

The world becomes stranger, the pattern more complicated

Of dead and living. Not the intense moment

Isolated, with no before and after,

But a lifetime burning in every moment

-- from T.S. Eliot's Four Quartets

Random Saturday

12

Henry, my son, was twelve years old on the 25th. He was born a giant -- nearly ten pounds -- and began smiling within weeks. He is filled with joy and ease, one of those people, apparently, who are effortlessly alive and loving it.

I adore him.

Heat and Weirdness

I'm so worn out by the heat and big family drama (not to mention The Sophie Saga) that I hardly have any energy to keep up the blog posts. So from here on out, until I arrive back in temperate Los Angeles and my trusty, old computer, I'm just posting pictures.

A crockpot of boiled peanuts at the 7-Eleven store outside of Hilton Head Island, somewhere in the country.

Tolerance

We have seventeen people living together in one medium-sized house this week. Tolerance is a necessity, and it's difficult, to say the least.

For instance, I drove in my mother's car from Atlanta to Hilton Head. Truckers ripped on by my luxury vehicle, honked their horns and gave me high fives. I thought, at first, that they thought I was cute. And then I realized that they were showing me approval for this:

Checking in from the hot zone

I'm still here, barely.

It's hotter than the lowest level of Dante's hell.

We've been circling one of those layers, Sophie and I, each night since we've been here. I'm not going to sugarcoat anything but I'm not going to elaborate. If someone asked me whether I had a good night, this is what I'd say:

Last night was the night I became an atheist.

On the bright side, The Husband is flying in for relief, and the boys are ecstatically happy.

I have a mess of photos to post but the internet is down and a few of the keys on this computer are gone.

Talk to you soon.

It's hot

Living in Los Angeles for more than a dozen years has effectively made me a weather wimp. I grew up in Georgia and lived most of my life on the east coast -- I slept in an un-air-conditioned dorm in college in North Carolina and lived many years in an un-air-conditioned apartment in New York City. But when I come back east for vacation, I'm always amazed at how intolerant of the heat and humidity I've become. How can people live like this, is what I think when I step outside.

Evidently, there are hotter places. This very old church sits right up the road from my parents' house in suburban Atlanta.

Right across the street is an old cemetery, most of the headstones buried in weeds. I stepped lightly, afraid of snakes.

After twenty minutes or so, I'd had enough and was drenched in sweat in my city girl clothes. My parents' house is an oasis.

We're here

and I'm typing away at my dad's fancy MAC computer. Ms. Moon just wrote a post extolling its virtues, and I'm almost convinced. I so need a new computer -- maybe in my dreams --

The flight was uneventful. No trips to the bathroom and no seizures.  At one point, I strolled up the aisle to the bathroom and was stunned at how many people were doodling and diddling on electronics. Ipads and iphones and laptops and DS games and PSPs. I do believe every single passenger had some kind of gizmo attached to their hand. It was quiet, too, because of it -- except for the one poor toddler who screamed his head off for at least a half an hour. There was a giant lady with the word JESUS on her tee-shirt and a group of women in head scarves. There was a bag of pretzels and a package of Twizzlers, a lot of reading in my Kindle (yes, I have a Kindle and I love it -- it doesn't take the place of books, by any stretch of the imagination; it's just a different way to read them -- and I'm as book snobby as they come, so there!) and some divine turkey sandwiches that The Husband set us up with.

All is good.

It's HOT, here, folks -- like a steam bath. I'm in Atlanta for a couple of days and then off to Hilton Head.

Hopeful Parents

The first flight at Kitty Hawk, NC - December 1903

I think I might be actually sort of funny today, over at Hopeful Parents.

Hysterically funny (with the emphasis on hysterical)