Cup of Comfort

This series of books informed me today that they had selected my story submission as a finalist for publication consideration in A Cup of Comfort for Parents of Special Needs. The book is tentatively scheduled for publication in May of 2009! How nice!

Recruitment

Today I went to the USC Medical Sciences campus and spoke with a group of medical students about the shortage of pediatric neurologists. I went with the president of the Los Angeles chapter of the Epilepsy Foundation of America, a pediatric neurologist from USC and another parent of a child with epilepsy who is also a film-maker and who had made a moving, informational video about pediatric epilepsy. Our goal is to make our way through California and perhaps the rest of the country (!), appealing to medical students to address and perhaps change the profound shortage of pediatric neurologists. I won't bore you with statistics but there are thousands of children with seizure disorders PER NEUROLOGIST in this country. We need more.

I'd never been to the USC medical sciences campus and when I drove up to the building where we would be speaking I realized that I was a half an hour early. I parked my car at a meter and got ready to read the notes that I had prepared, but when I glanced up and out at the campus, I had a jolt of anxiety. I always get anxious when I go to hospitals and can only figure that it's a form of post-traumatic stress disorder. I honestly HATE hospitals and medical centers. The sight of young doctors and medical professionals makes me feel queasy, and it takes a lot of breathing and concentration to talk myself "down." I have a lot of friends for whom this doesn't happen. Even though they've spent lots of hours with their children at clinics and hospitals and emergency rooms, they claim to NOT have these sorts of feelings. They feel safe, they say, taken care of, and not a little in awe of the bustle and brains that are seemingly behind the operation.

Not me. Not me at all. I positively DREAD going near medical sciences buildings. But today I had to go in and talk, hopefully inspire, spin stories, be positive, be jolly, say We need you. We need you desperately to help our children. Don't be a dermatologist!

The lecture hall was HUGE and slanted downward. There were about ten overhead flat-screen televisions. The medical students that filed in were young. So young. I swear that some of them looked like they had acne. I was old enough to be their mother. But they were earnest and serious and asked questions. The neurologist was fantastic, and the video seemed to make an impact. The students ate Subway sandwiches and rushed off to another class. We had to hurriedly leave the auditorium when an alarmingly bespectacled physician came in and set up his notes and slides. I felt sorry for the students filing in, because they faced those ten television screens with the words "THE PATHOLOGY OF AIDS" on all of them. The other parent, whom I barely knew said in a dark way that I can certainly understand, "From the sublime to the absurd." I couldn't get out of there faster.

I hope we made a dent. I hope one of those fresh faces felt even a nudge. In the meantime, I'm happy to be writing in my cosy room.

Privileges

Sometimes the perks are great, folks. How about this awesome bumper sticker my friend Suzy gave me?

Ordinary Things

The boys and I went to a small Halloween party tonight at my good friend's house. She had bought some pumpkins for the kids to carve and made some chili and cheese quesadillas for us all to eat. On the way over, Henry decided that his planned costume, a bank robber, was "boring." He decided that he wanted to dress like a girl, instead. We debated whether he'd wear a dress or a skirt and decided a dress. Then we went back and forth on hair style and decided no wig, just barettes in the hair he has. I can't wait to see his wide, freckled boy face with a girly hairdo on Friday.

Oliver, on the other hand, has known for weeks that he wants to be a SWAT officer. He's always had a propensity for law enforcement and the military, a fascination and at the same time unbridled fear of the police. In fact, he has always been a challenging kid, sassy when he shouldn't be, outrageous, sometimes, in defiance, but whenever I threatened "juvy jail," he would literally scream (for real) in protest. He doesn't like to be teased about juvy jail. In my worst mom moments I imagine him in jail at some point, telling a friend he had this wild fear of juvenile jail as a small child; do you think it was a premonition?

But he picked out his costume from some cheesy catalog and it came, wrapped in plastic a few weeks ago. Even though I warned him that he should wait until Halloween, he opened it and tried it on. He strapped on the belt that holds the guns, the billy stick and walkie-talkie and walked around the house and up and down the sidewalk. I have to admit that he looked menacing -- a cross between a sweet on-the-short-side seven year old in too-small penny loafers (they were the only black shoes he had) and a member of the Village People (remember that band?). He wore his costume tonight to the party and carved a pretty great pumpkin.


The food was delicious and the company great. When I got home, I put Sophie to bed and started reading on the computer. I was interrupted suddenly, though, by the sound of her having a seizure. The gasp and groan that becomes a yell. By the time I got to her bed, it had already subsided so I just wiped her face and sat with her for a few minutes.

This is ordinary too. Or is it?

And then a friend sent me a copy of a poem.

The Patience of Ordinary Things
by Pat Schneider

It is a kind of love, is it not?
How the cup holds the tea,
How the chair stands sturdy and foursquare,
How the floor receives the bottoms of shoes
Or toes. How soles of feet know
Where they're supposed to be.
I've been thinking about the patience
Of ordinary things, how clothes
Wait respectfully in closets
And soap dries quietly in the dish,
And towels drink the wet
From the skin of the back.
And the lovely repetition of stairs.
And what is more generous than a window?

Paradise Lost and Regained

A little Milton and a little politics. Good for me, because I like my poetry and politics to mix.

Read it here.

The Undecided

During the last few weeks, I've started to think about who, really, can still claim to be an undecided voter. And I also decided that I was just going to throw up all tact and compassion and think, what the f@@@$%%%, are you just plain stupid? I was going to embrace the elite in me and narrow down the folks who are voting for McCain as just plain dumb and the ones who are undecided as even dumber. I was just thinking these things, though, and maybe every now and then sharing them with like-minded friends (you know who you are and those who aren't, well, I'm not apologizing, such is the strength of that belief)!

I read the always funny David Sedaris this morning and wish I had the nerve to just go ahead and say it like I see it. Read it here.

A Voice

Henry and Oliver always ask whether Sophie will ever talk. At one point in their short lives they were pretty obsessed with it. I know that candles on birthday cakes were blown out with that wish and more than one coin was thrown into a fountain with that wish. There is something about the spoken word that defines our humanity and without words, we are all hard put to define Sophie. It's ironic, too, that I am somewhat obsessed by words. Not just by what they signify but by the words themselves. The words on paper, the words out of the poet's mouth, on the paper.

I have been so enamoured of words since I was a little, little girl and even today I am most thrilled, most excited by speech and by the careful and beautiful work wrought by writers. Sophie, though, is silent and has no words and I have felt bound, somehow, to defining her through words. Being an other's voice. And when I read, I don't actually hear the person writing -- I have a couple of CDs of writers reading their work and the combination of words and speech is almost too much to bear. It's him, I think when I listen to W.B. Yeats reciting in his thick Irish accent "The Lake Isle of Innisfree." His words and his voice make me shiver and I'm not sure whether it's the words or the voice or knowing that it's Him.

Michael told me that NPR did a special today about some recordings of British and American writers. The BBC possesses the only, actual voice of Virginia Woolf reading for a radio broadcast for over eight minutes. You can listen to it here. When I listened to it, I kept thinking, It's Her, it's her, that sound, those proper vowels and streams of thought are embodied in voice.

I'm rambling, now, but I had some kind of thread going -- the notion of our own voice and Sophie's lack of one. My intense devotion to word and voice, really, and struggle to understand the silent in Sophie. The ineffable.

The Love That Shines Through

That's the title of an article I just read online here.

My favorite quote that I'm bashful to admit believing whole-heartedly:

“He explained that kids so handicapped are actually on a higher plane than you or I,” Mr. Rattner said. “We’re put on earth to perfect ourselves, and most of us have so much to do. But there’s not much they can do, they’re nearly complete. A couple of little tweaks and they’re ready to meet God.”

I love that.

It's Hot in LA

It was a strange day at the beach, a hot afternoon in late fall when the temperature hovered near 90 degrees and the air was so dry your skin felt stretched over your bones. The only time of year that I hate living here is now, when it's STILL HOT and there aren't any colored leaves to speak of, much less cool and crisp air. It looked like fire over the Santa Monica Mountains but the people who were at the beach in the middle of the day didn't seem to mind. I heard a lot of Russian, spoken by people dressed in that fin de siecle Russian sort of way (I think that when the Iron Curtain was drawn, they must have positively swarmed toward the logoed sequin tee-shirts). I saw an older man dressed in safari clothes with giant black cushioned earphones on, methodically pushing his metal detector over the sand, and lots of naked toddlers with their California bikinied moms wearing floppy canvas hats and huge sunglasses.


Sophie and I walked a little and sat a little. She leaned over and dug her hands into the sand and then she'd stand up and we'd walk a little again. Sophie loves the ocean so much that we say she's actually a mermaid and the reason why she's so uncomfortable on land is that she belongs to the sea. Whenever she gets to the beach and sees it, the edge of the water seems to pull her like a magnet and she smiles, which is rare. Her walk is purposeful and fast and you almost feel like she's tugging you toward it. Like the moon and the tides.




Today, two old men with white, white hair and tan, sinewy bodies walked down toward the water. One of the men had wasted legs and dragged himself with two crutches out into the water to about the depth of his calves. The other guy took the crutches and helped him to sink down into the water until he was on all fours. Then he walked the crutches up to the sand and joined his friend who was slowly crawling out to the water until he could actually swim. When they both reached the break, they started body-surfing. Two old guys in Los Angeles on a hot fall day. What a fabulous sight for the Mermaid and me. Who needs fall leaves?

Why I Blog

Andrew Sullivan in the November Atlantic says it all:

http://www.theatlantic.com/doc/200811/andrew-sullivan-why-i-blog

Pink Poodles

I woke up this morning and felt human for the first time in a few days. I had a bad head cold and sore throat and somehow, when I'm sick I also feel profoundly depressed, sometimes morbidly so. I tell myself that there must be some sort of central nervous system component to colds and flu (and don't we know a lot about the central nervous system around here?)and that would account for my lassitude and certainty that I will never feel good again.

But when I opened my eyes this morning, I felt distinctly better and that's when the mania set in. This is my usual pattern: feel like I'm getting sick and deny it -- is my throat scratchy or is it just the Santa Ana winds? -- continue the rest of the day, feeling more and more lousy but still not certain if I'm really getting sick -- go to bed early, sick and wake up the next day even more sick. Then the real depressive thoughts creep in and I do a lot of internal moaning and groaning and sometimes some external weeping. So, when I woke up this morning feeling distinctly better, I decided to go to Target after I'd dropped the boys off at school.

I love Target. I've been known to get lost in Summerland, drowned in the sea of sunflower plates and coordinating coolers. I often have more than six items to try on in the dressing room and my cart is usually so full of, well, shit, when I near the cash registers, that I toss a whole lot of it overboard. This morning, my post central nervous system component of my hideous cold was so lifted that I felt positively elated and therefore convinced that I absolutely had to have the giant pink stuffed poodle in the toy aisle. It'd be perfect for Christmas for Sophie, something that she can just fall onto when she wants, I thought. And because it was too big for the cart, I sort of draped it in and over the child's seat at the front. I did have a couple of qualms about the size -- where would I hide it so that the boys, who still believe in Santa Claus, wouldn't see it? And was that dirt on the paw or just some sort of shade?

As I rounded the corner with my pink poodle, I almost bumped into a young guy in a wheelchair who was at the head of a line of special needs teenagers. They were a motley group of young men and women, staggering and winding in what can only be described as a carnival-like fashion, but that also implies the idea of freaks, and these were not freaks. I stopped and said, "Hi! How are you guys doing today?" One of the aides perked up when I spoke and looked defensive but I quickly explained that my own daughter had special needs and I was just wondering what school these kids were from. It turned out that the aide had substituted at Sophie's school and even knew her, and she told me that they were on a community field trip, "learning how to shop." At this point, the kids were crowding around my cart and the pink poodle and asking me questions in garbled, slurred voices. Then they were all ushered off and back into a line and continued on to --- learn how to shop.

I stood there for a second or two and leaned into the pink poodle. After a few days of a central nervous system-connected cold, I wasn't about to go there, and the thought that was a thread (Sophie will do this one day, soon, but she's so beautiful, how could it be?) was scissored off. I jauntily kept going, stopping at the Halloween section to pick up a bag of candy corn and some window gel-things for the boys' room and then over in the cleaning section some of that fabulous all-natural cleaner stuff. Then I headed over to the medicine section and bought a new bottle of Tylenol to replace the one that I'd emptied over the past two days. Paper napkins were next and then some red lip stain in cosmetics.

And right before I rounded the last corner to the check-out line, I chucked the pink poodle.

Blog Snobdom

My friend David told me that I need to blog more. My friend Laura wrote a brilliantly funny posting about nothing, really, and my other friend Denise posted about spiderwebs, connections and coincidences. I guess my point is that I'm always waiting around for the perfect blog moment. Something REALLY big to write or tell about. I hate using the word "blog" as a verb; I still have vestiges of blog snobdom. I've always been a bit of a cultural snob, anyway -- I scorn bestsellers and hate genre fiction and anyone who knows me knows that I wouldn't be caught dead listening to pop music. My old college friends remind me of the time that I heard the song "We are the World" and commented that it was so great. The only thing was it was about a year after the song had come out. And it's the same with the blog. I have a near-addiction to a number of blogs whose authors aren't writing anything that earth-shattering nor do they seem all that concerned with "the writing." And these blogs are so good, so funny, so well-written that I feel like I'm really on to something.

I'm ready to make some sort of big cultural commentary -- about community and the 21st century. I'm proudly trying to justify just how addictive and fabulous blogs and blogging are. As if the tens of thousands of people who actually do it regularly don't already know that (start humming "We are the World" right now in your head and rolling your eyes).

So I'm stuck here in snob blogdom, or is it blog snobdom, waiting for the next good story. A cousin of mine recently looked at my blog and made the comment that she was reading "the intimate details of my day to day life," and was "impressed at my honesty and willingness." I have to say that I winced at this. I don't want to write about too many intimate details of my day to day life. I don't want to be one of those people.

Honestly, the majority of my hours are completely and utterly boring. I drive around town all day dropping children off and picking children up. I make a lot of phone calls to insurance companies and school districts and doctors and do a lot of paperwork. I check my email and my favorite blog list. I read the New York Times and the calendar section of the Los Angeles Times, but aside from the constant low-grade anxiety that I have about Sophie, that's about it.

The good thing about blogs, though, is that they force you to look for differences, look for moments. They are, I'm thinking, the modern world's call for mindfulness.

Because of the blog, as I drive my boys to school, up the same street that we've travelled literally hundreds of times in the last few years, I'm listening extra hard to what they're saying, because then I might post it. I'm more present in the moment but I can also store things, here, seemingly forever.

Look! I'm already out of the blog snobdom. I've got a post, here. It's boring but I've got a new post.

OH! This is what I overheard a woman say to a man outside Trader Joe's today: "I don't know. Angelina's lips are just too distracting for that part. I know who else read for it and..." The best thing is that I listened to this in a sort of distracted way but because of the blog then was jolted into a more mindful state of being. I started thinking only in LA does one hear the casual remark about a super-celebrity, another person who "read" for her part, big lips and this is all outside of the grocery store in the middle of the afternoon on a weekday! Then I started thinking about all the cliches of LA and how they're true and how they're false and that led to some civic exhiliaration and then I was at my car, loading everything up. My brain was working and I was thinking, again, about the blog.

Enough. I'm done. And I think I'm going back to the important stuff.

I Can't Get Enough of Her

I know. This is my blog, where I'm supposed to write about me. I think. But I just can't get enough of Annie LaMott and this essay in Salon.com is just terrific.

Heavenly Day

The caption for the photo is: Good News -- She's Going to Exercise. I'm not a smoker, but this is my intention today. To exercise again. I haven't in over a month and I can really, really feel it.

So much bad news of late. It just seems relentless. When it gets like this I tend to do a lot of bitching and moaning. I'm trying to stay apprised of everything going on in the world of politics and business, but I want to run to the hills with my books of poetry. And sometimes I forget about music. My good friend Suzy sent me this link.

I'm going to hum this song and start exercising.

Hanging On

Sophie fell today in her room. I was doing laundry or at least carrying the laundry basket toward the laundry room, and I heard the thump and her cry. Sophie doesn't cry, really, but she squawks, and this one was loud enough that I ran into her room. She was on her hands and knees on the carpet and blood was dripping down from her head into her eyes. There was blood on the carpet and dripping down the dresser. "Oh my God, Sophie," I think I said, and I grabbed her green and white pajama pants from the bed and lay her down, looking for where the cut might be. Now, Sophie has fallen many times in thirteen years and had a number of accidents, both big and small. We are no strangers to stitches and emergency rooms and all that crap, so my thoughts were running along the lines of where is it? where is the cut? Is it huge? Did she split her head open? Where is it? And while I'm thinking this, I'm going through her thick, curly hair trying to find where the blood is coming from. I found it, just at the top of her forehead, about an inch back, so that's where I pressed the pajama pants. And then I grabbed the phone, which happened to be on her bed and called Michael. "You have to come home and help me," I said when he answered. "Sophie fell and cut her head."

"Oh, Jesus, I'm on my way," he replied and we both hung up. We know what to do and we're like one person in an emergency. When I pulled the pajama pants away, the bleeding seemed to have stopped and I wondered whether I would have to go to the hospital at all. We hate going to the hospital. Probably a lot more than most people. And the cut didn't look too bad, like a puncture almost. I couldn't figure out if it was big enough or deep enough to stitch, but when Michael came running into the house and her room, he took a look and said that it was going to be fine.

That was all I needed. We wiped all the blood off her face and around the cut. Michael snipped a little of her hair and put a red bandaid over the cut, and I changed my bloody pants and soaked them in cold water with Sophie's pajamas. Then he went back to work and I made Sophie some lunch. The babysitter came soon after and took a look at the cut, too. We thought that it needed a butterfly bandaid, so I went over to the grocery store to buy some.

That's when I started to shake and cry. In the car, on the way to the grocery store. Sophie has hurt herself much worse before and she's also been hospitalized for much worse. I'm aware that I'm exceptionally calm in a crisis, hers or anyone's, really, and it's only afterward that I actually fall apart. But today I felt too broken up about it. I had the thought that things weren't getting easier for me. Or for Sophie. For any one of us. That I wasn't getting used to things and stronger. I felt, instead, weakened. At the edge. Hanging on. Why is that, I wonder? Am I finally burnt out? It was just a cut, after all. And I know that I shouldn't go looking for it to be more. For it to be a symbol of the whole situation.

As I was pushing my cart back to my car, the guy from the grocery store who collects all the carts walked up to me. He was old and had a pronounced limp. Our local grocery store hires quite a few special needs adults, to their credit, and this guy appeared to be one of them. He helped me put the bags into the back of my car and then took my cart and added it to the long line that he had already collected. I thanked him and went to get into the car, but he spoke.

"You look sad," he said, "But you're so beautiful."

In a weird and almost superficial way, that was what I needed to hear. It was the nicest thing I'd heard in a while, actually.

In the end, Sophie didn't need the butterfly bandage. Her head looks all right. She'll be fine and I guess that I will, too.

Hard Times Come No More

Sophie is doing better, drinking her Chinese tea and getting needles stuck between her eyes and all over her head. Here's a video I saw posted on another blog. Always loved the song and who can resist Rufus Wainwright, his mother, Kate McGarrigle, Emmylou and Mary Black?

http://www.youtube.com/watch?v=4YrfLnlrquo

Complacencies of the Peignor

That's a line from one of my favorite poems by Wallace Stevens. It's called "Sunday Morning."

And here's another:

In the Carolinas

The lilacs wither in the Carolinas.
Already the butterflies flutter above the cabins.
Already the new-born children interpret love
In the voices of mothers.

Timeless mother,
How is it that your aspic nipples
For once vent honey?

The pine-tree sweetens my body
The white iris beautifies me.

That one makes me think of scribbled notes in small rooms in the fall.

Wallace Stevens sold insurance for a living and lived in a modest house in the suburbs of New Haven. I drove by the house once with someone I knew, and we rolled down our windows and sat in the car and stared at it for a while. Evidently, Wallace wore a hat when he went to work (this was the forties?) and carried a briefcase. He walked back to his home and his wife, thinking about winter and ideas of order in Key West. He scribbled his poetry on scraps of paper, in between selling insurance.

His poems are wild and weird and I love them. They make me feel old and wise, like my brain has to work and it has nothing to do with me. They make me laugh and have butterflies in my stomach. The exhilarating kind where your nerves are on fire. Like this:

GUBBINAL

That strange flower, the sun,
Is just what you say.
Have it your way.

The world is ugly,
And the people are sad.

That tuft of jungle feathers,
That animal eye,
Is just what you say.

That savage of fire,
That seed,
Have it your way.

The world is ugly,
And the people are sad.