Monday, May 31, 2010

Singing the Warriors Back

Last week I got the usual slew of chain emails with all the pithy reminders to honor our fallen soldiers on Memorial Day. I also saw many Facebook status updates with the admonitions that our liberties have all been gained with blood. On Saturday morning, I had the honor of attending a three-hour benefit for Insight LA, an organization that promotes and teaches mindfulness classes. I sat with one very good friend and six hundred other people inside of a beautiful church and listened to Jack Kornfield, a clinical psychologist who trained as a Buddhist monk and is one of the key teachers to introduce Buddhist mindfulness practice to the West. He regaled us with hysterically funny stories, led us through some profound sitting meditations and kept us all rapt for the entire three hours. But it was his story of an ancient Irish warrior that struck me, especially as it pertained to Memorial Day. The warrior returned from successful battle still filled with warrior rage, with the wild and burning success of rampage, so heightened that his fellow villagers knew that he couldn't stop, couldn't begin to be normal, again, without help. First, all the women of the village lined up in one great long line and bared their breasts. That slowed him down. Second, they caught the warrior and dunked him into several vats of freezing cold water. Third, they tied him up and sang him back to the present.

Jack then closed this story (which got some rippling laughs) by asking Who will sing to the warriors of Iraq and Afghanistan? Who will sing the hundreds of thousands of them back?

And now, either I'm lazy or I'm on a roll with re-posting. This is from the same day, last year, and remains true on this day, this year, for me.

MONDAY, MAY 25, 2009

Memorial Day

I always feel conflicted on these holidays -- the national ones where we're supposed to feel patriotic, full of honor, all those things. I have made no sacrifice for my country and have, actually, often despaired of my country. I struggle to feel the "right" way about soldiers and those who have died "for our country."

I do remember this poem, though, by Wilfred Owen. I remember reading it in high school from my white Norton Anthology. I remember feeling horrified. I remember wondering what sort of man Wilfred Owen might have been had he not died in a World War I battle when he was only 25.

Dulce et Decorum Est
Bent double, like old beggars under sacks,
Knock-kneed, coughing like hags, we cursed through sludge,
Till on the haunting flares we turned our backs
And towards our distant rest began to trudge.
Men marched asleep. Many had lost their boots
But limped on, blood-shod. All went lame; all blind;
Drunk with fatigue; deaf even to the hoots
Of tired, outstripped Five-Nines that dropped behind.
Gas!7 Gas! Quick, boys! – An ecstasy of fumbling,
Fitting the clumsy helmets just in time;
But someone still was yelling out and stumbling,
And flound'ring like a man in fire or lime . . .
Dim, through the misty panes and thick green light,
As under a green sea, I saw him drowning.
In all my dreams, before my helpless sight,
He plunges at me, guttering, choking, drowning.
If in some smothering dreams you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil's sick of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene as cancer, bitter as the cud 
Of vile, incurable sores on innocent tongues,
My friend, you would not tell with such high zest 
To children ardent for some desperate glory,
The old Lie; Dulce et Decorum est
Pro patria mori.

Sunday, May 30, 2010

I've been tagged - Part II

UPDATE: I tag my dear friend, Laura of Piece of Cake to post her fifth and tenth posts from her blog. The reason why is because she's brilliantly funny (check out her post for today), an incredible baker and cake-decorator, she's moving soon and doesn't have anything better to do than to respond to this tag and she's the one who got me blogging to begin with!

I explained below that Ciara at Milkmoon, a lovely Irish blog that I've been reading for quite some time, tagged me for a re-posting of the fifth and tenth posts I wrote. Both were written just about two years ago, and while so much has changed, so much has not. That is at once a miracle and depressing, I think -- and underlies the conflict I have in my heart between there is nothing new under the sun and nothing is permanent and everything changes.

Here's my tenth post:

MONDAY, JULY 28, 2008

Special Knees

I am in Hilton Head, South Carolina for the next two weeks, visiting my extended family. We all meet here once a year, usually the last week or so of July -- my two sisters, their husbands, their children and my parents. There are seventeen of us in all -- eight adults and nine children that range in age from 14 down to 2. We all stay in the same house and despite a minimum of space and a maximum of chaos, get along for the most part. There's usually a little fighting, a lot of laughing and next to no real relaxation. For the first few days or so, I hate it. I hate the noise and the stress of being with family -- somehow we all say the absolutely wrong thing at the wrong time to each other. At first, it seems, only the kids run around joyfully, happy to see each other and eager to carry on memories from the previous summer. There's always a little fighting with them as well and tears and complaints and tattling, but for the most part they get along.

But as we slowly get adjusted to each other and figure out who goes to the store and who fixes what lunches and what dinners, things get better. I realize that my mood is sometimes governed purely by how Sophie is doing.

Part of my own initial dread of this "vacation," is bringing Sophie along. It's a rare summer that she does "well," and by "well," I mean sleeps and doesn't have seizures. Traveling across the country is hard on her, but she loves the beach and I've stubbornly wanted her to be a real part of things. She IS a real part of things -- it just has to be sort of enforced. Because of the way the house is set up, there is no real safe place for her to be -- lots of hard, Mexican tile and scratchy seagrass floor coverings. We're nervous to let her walk around, in case she stumbles and falls or has a big seizure. We have to sleep with her at night so that she doesn't get or fall out of bed. But I'm making a long story short. Lots of family and the life sort of swirls around Sophie who sits in her stroller/wheelchair, in the middle of it all but not really. The other eight children run by her out to the pool. They open and close the freezer and grab ice and popsicles. Sophie sits and hums and watches. The younger children are still getting used to her. They circle her warily, unsure what to think of this large girl who sits in a stroller and hums.

Claudia, my youngest niece, is five years old and has a Louise Brooks bob and enormous brown eyes under the fringe of bangs. She already has a quirky sense of style and tends to throw on mismatched clothes that actually look good together. She grabs pieces of fabric and wraps them around her head or puts on her mother's sunglasses and pokes her hair behind her ears. Right now she is noticeably curious about Sophie. She and I walked alone down to the beach this morning, and as we strolled under the canopy of fir trees on the path, she kicked the pine straw and asked me, slyly, "Why is Sophie still sleeping?" When I told her that Sophie had a particularly hard night, that she hadn't slept because she'd had a big seizure, she asked, "What's that?" So I gave her my stock explanation of what a seizure is, tailored for a five year old -- that Sophie's brain didn't work properly sometimes and that she had a hard time learning things. I told her that Sophie couldn't talk but she could understand a lot, so it was important to pay attention to her.

Claudia said, "Why can she understand but not talk?" I don't remember how I answered this, but I know that I went on to talk about Sophie's special needs. I told her that we all had needs but that Sophie had special needs. I asked her whether she had any children in her school that had special needs and she said no. We walked a little bit further and then she stopped. Her head tilted a little and she looked up at me, a brown-eyed sprite in a sagging little-girl bikini. She lifted up one brown, knobby knee.

"But why," she said, "can Sophie walk even though she has special knees?"

I've been tagged

by Ciara at Milkmoon, a beautiful Irish blog. I rarely respond to tags but thought this one might be fun. I am supposed to re-post the fifth and tenth posts of my blog. It's hard to believe that these posts were written nearly two years ago -- so much has happened in those two years and so many connections have been made between myself and people all over the world. I am grateful for that.

So here's the fifth and later I'll do the tenth and tag someone else!


Surf Camp

I dropped my two boys off this morning in Manhattan Beach for another day of Surf Camp. The sky was gray at 9am and the water blue, but their faces were radiant when they ran from me toward the beach, their thin bodies encased in equally thin rash guard shirts and flowered swim trunks. I decided to stay a little and watch, hanging over the rail at the parking lot, the stream of surfers and joggers and dog walkers. After a half an hour or so, the sun had come out and glinted off the water. The surfers were black bobbing knife edges in the blue and my boys were sitting in the sand with the other campers. They were meditating and doing some yoga, one of the reasons that I'd enthusiastically signed them up for the camp. When I told my father that the boys were going off to surf camp this week he said, "Great, they'll grow up and have long hair and do nothing." I didn't tell him about the meditation.

The truth is that I'm about as East Coast as you can get. I love urban life -- the food, the movies, the black clothes, the grittiness of it all. I never loved a place more than New York City when I lived there through the 90s. I'm not an athlete and have never had the remotest interest in sports. That was until we moved out to Los Angeles and I became if not obsessed than certainly acutely interested in surfers and surfing. I am a bookworm and a self-confessed literary snob and have never played any sports, but if I could have another life, this is what it would be. I'd not think about much at all and if I did, it'd be about the waves and the morning and the feel of the water and where I was in it. I'd wear a bikini and put on my wetsuit right by my Volkswagon van. I'd walk down to the ocean with my board and then I'd just paddle out and wait for the perfect wave.

I haven't done any of it yet, though, and fancy some sort of girls' surfing party when I turn forty-five this year. In the meantime, it's not without envy that I stand here and watch the rituals of the morning surfers at the 45th Street lifeguard tower. There's an impossibly good-looking young guy waxing his board to my right and an old man with a wrinkled, sagging wetsuit walks by me, board on his shoulder. The man next to me at the rail just got a hip replacement and has a head of shockingly white hair, but he's complaining that he can't surf for another month. I'm a middle-aged woman with plum-colored Wayfarers, watching her two boys grow up in the southern California sun. Who knows -- growing up with long hair and doing nothing might not be too bad after all.

Friday, May 28, 2010

What I did today

Removed electrodes and glue from Sophie's scalp. Thanks to the wonders of technology, she had an EEG that was ambulatory. That meant no hospital overnight. She was hooked up yesterday and sent home with a white mesh turban. Each time she had a seizure, I pushed the little black button on the box that she wore in a fanny pack. She wore it for twenty-four hours and then I removed the sticky electrodes and wrapped them in a paper towel. The little black box went into a larger brown box and the folks at FedEx took it from me. I know it sounds sort of gross, but the phrase brain in a box went through my mind. And Sophie looked a bit like a radical Muslim when she was hooked up (which makes me wonder how many trolls will attack my patriotism, now --)!

A day in the life.

Friday Flowers

Thursday, May 27, 2010

I just wanted to get to yoga class

I'd like to say that when I woke up on Friday morning, I opened my eyes, stretched my arms over my head and wriggled in anticipation for today was the day that The Husband would come home from work and drive my daughter to school so that I could make the 9am yoga class that I've missed the past three months. I'd like to say that I rose before everyone else, except for The Husband who had already left for work, made coffee and sat in the easy chair in the dining room, my eyes lighting on the perennials in bloom in the yard, the hummingbirds buried deep in the penstemon, the friendly neighbor with the new dog just visible walking down the street, the silence of a sleepy house. I'd like to say that when I went into my sons' room and shook their small shoulders, gently, they rolled over and smiled up at me and said Good morning, Mom. 

To continue reading, go on over to my twice-monthly gig, LA Moms Blog!

Wednesday, May 26, 2010

Epilepsy Action Alert -California Readers!!!

One of the hats I wear is board member of the Epilepsy Foundation of Greater Los Angeles. This past year, several of our board members have been aggressively pushing for special legislation in the California state legislature that affects tens of thousands of children with epilepsy in southern California. We are collectively urging the Senate Appropriations Committee to support Senate Bill 1051 - Emergency Medical Assistance - administration of Diastat bill. This bill will help make sure children in California with epilepsy who may have life-threatening cluster seizures or status epilepticus will get the emergency medication they need in a timely and safe manner while in school. Members need to know that a child's need for Diastat can be a life and death matter and not a financial decision. The Epilepsy Foundation affiliates in California endorse and strongly support Senate Bill 1051.

This is a no-brainer, currently stymied by powerful special interests, lobbies and unions. It's non-partisan, the type of legislation that could have enormous positive impact on the lives of children with epilepsy that require the emergency use of Diastat (my Sophie being one of those children!). You can read about the politics of the issue in an excellent article by Steve Lopez in the Los Angeles Times, today by clicking HERE. Steve Lopez is the writer who brought our attention to the problems on Skid Row here in Los Angeles; he is nationally recognized as the writer of the book The Soloist which was made into a movie of the same name starring Robert Downey, Jr. He is an excellent writer and a journalist who relentlessly comes down on inequalities no matter the political party. This is good reading, even if you don't live in California!

If you live in California, you can help get this legislation pass by contacting members of the committee ASAP and

  1. Identify yourself as a resident of CA
  2. Ask him or her to please support SB 1051 so that if a child with epilepsy has life-threatening clusters of seizures, that child will be able to get their needed medication without delay.
  3. If you have a child that uses Diastat, please share your personal story of why this protection is needed.
  4. If you, or a loved one has epilepsy, please let the Senator know how important it is that people with epilepsy have access to their medication.
  5. Let them know that this bill will actually save money by avoiding unnecessary costs of an ambulance, emergency room, medical tests, etc. as well as the untold expenses of a child's suffering and potential safety.


• Christine Kehoe (Chair) 916-651-4039 (San Diego)
• Elaine Alquist - 916-651-4013 (Santa Clara)
• Ellen Corbett - 916-651-4010 (San Leandro)
• Mark Leno - 916-651-4003 (San Francisco)
• Curren Price - 916-651-4026 (Los Angeles)
• Lois Wolk - 916-651-4005 (Linden)
• Leland Yee - 916-651-4008 (San Fran / San Mateo)
• Senate Pro Steinberg at 916-651-4006

With your help, this bill has already passed the Senate Education and Health Committees. We now need your support to get through the Appropriations Committee and to the full Senate. Please call today!

Tuesday, May 25, 2010

Settling from Unsettled

Unsettled #6, Parsons Harbour, Southwest Coast (1998) by Scott Walden

I had an unsettling telephone conversation today with someone whom I will not name, someone very close to me. I felt distressed after this conversation and stirred up in ways that didn't feel right, that didn't feel healthy or affirming. When someone gives me advice or tells me what they think I should do, I am aware of their intentions, aware that their motivation might be one of love but is also a deflection. I am aware of my own aversion to authority, a personality trait that is only strengthened as I get older. I am aware of my defensiveness, the limber bulwark I've constructed around myself that bends but never snaps. I am aware, too, of my fragility, the tiny pieces, the fragmentation. I am most painfully aware of messiness, of the push and pull of family, of obligation and the tensing of the self against both.

My eyes, hot tonight from the sting of tears earlier, found rest in a poem by Anne Carson that was posted on Allegra's blog. I read the poem and then remembered part of a radio interview that I had just heard on Bookworm between Michael Silverblatt and Anne Carson. Carson has published a new book, an unusual book that deals with her grief over the loss of her brother. It is called Nox, the Latin word for night, and she opens the book with a translation of a poem of Catullus, the Roman. I sat on my bed and re-listened to the interview while knitting a pink baby blanket. The needles clicked and the soft wool slid through my fingers as Carson spoke in a voice just over a whisper of her book, of her grief, of her brother, of her process in creating this book. She read her translation of the Catullus poem aloud while I knit, but when she read it in Latin, I stopped and looked up, as if the words were floating out of the speakers, into the air that I breathed.

Monday, May 24, 2010

Monday's Horoscope

Virgo (August 23-September 22)

You have people in your corner who love you no matter what. This is the stuff happy lives are made of.

Sunday, May 23, 2010

That Old Gray Mare

She ain't what she used to be,
Ain't what she used to be.
Ain't what she used to be.
The old gray mare,
She ain't what she used to be,
Many long years ago.

Losing my touch

In another life, the life I had before the children and seizures and The Husband, etc., I was a pastry chef. I was also married before, too. Have I ever revealed that on this blog?

Wowza. The lady has a past.

One fine summer day in Nashville, TN where I lived with Husband Number 1, I decided to quit my job writing financial reports for the research department of a small, regional brokerage firm. I had fallen into this job, post college, because there was nothing else to do with my Bachelor of Arts in English and French Literature. I didn't want to go to law school and didn't want to be a teacher. I fancied myself a writer, I guess, but I needed to earn a living, so when this very prestigious brokerage firm hired me to write financial reports for its retail brokers, I jumped. I think I negotiated a $16,000 a year salary which seemed fantastic at the time.

Aside from the excitement of being sent on two business trips to Chicago and New York City, where I stayed in giant, luxury hotels (The Drake and The World Trade Center), I was bored out of my mind. I typed out my reports, went shopping on my lunch breaks in downtown Nashville and otherwise whiled away my days, yearning for something different. The stock market rose and fell, rose and fell and then finally fell deeply and cataclysmically and everyone grew depressed and morose and the job was really no fun at all. When my boss called me into his office and recommended that I study and get the CFP (certified financial planner!) accreditation AND take on the utility/railroad stocks as my expertise, I said, You know what, Ron? He said, What? I said, I think I want to take my two week vacation in cash and quit. He said, That would be a mistake for your career which could be promising. I said, No. I don't want to work here, anymore. It was a revelation to me, and as I spoke angels were beating their wings, the air outside the cubicle sparkled, beckoned, and Joni the receptionist with the teased blonde up-do filed her nails and placed another pink sheet in a slot of the revolving black message holder. I stood up. Ron said, Don't you think we know best for your career? And I said No and backed my twenty-six year old self out the office door.

And that was that. I packed my picture frames and favorite pens in a brown cardboard box. I walked out of there and never, never looked back.

I became a waitress in a small restaurant on Music Row, a famous vegetarian place run by a nutball Korean woman who insulted everyone at one point or another but loved us fiercely. Eventually, I asked to work in the kitchen and was slowly trained by Paul, a convict on work furlough (he'd murdered his wife). There's a whole blog post -- maybe even a short story -- about that.

But I digress. I made my way to New York City and actually became a bona fide pastry chef. I worked in a luxury four-star restaurant and a 1600 room hotel. I learned to pull sugar and make chocolates. I learned to decorate cakes and bake French pastries. I got up at three in the morning and made danish dough with the early shift (another short story). I hung out in the kitchen with the likes of Staten Island Italian boys and Chinese men with names like Riccardella and Kwok and Chung. It was glorious, for the most part.

And when I quit my job and had my first baby, Sophie, I wasn't sure if I'd ever go back to the often back-breaking work, but when she developed her seizure disorder, I knew that I wouldn't. I did continue to make cakes free-lance for friends and sometimes strangers, and I got pretty good at it. A few years ago, I gave that up, too.

Apparently, I've lost my touch. I recently told one of my very best friends that I would love to make her husband's birthday cake. She said that she'd let me but only if I accepted payment. I told her that was fine, thinking that maybe I'd get back into it. Make a little money. Especially because my friend Laura of Piece of Cake is sadly moving from Los Angeles. She's the cake lady around our neighborhood, and while I could never do some of the stuff she can do, maybe some of her clients would come to me?

I set to work making a white cake with ganache filling and French silk buttercream frosting. I used nine egg whites for the cake and filled three nine-inch pans. They came out beautifully and sat cooling on the cake rack. I chopped up 12 oz. of bittersweet chocolate and put it in a bowl, poured boiling heavy cream over it and stirred until it was silken smooth. I set the ganache aside to thicken and began the laborious process of making the buttercream. It, too, came out silky smooth, tasting of vanilla and sweet butter. I remembered, again, how good I am at making real buttercream and how good it feels to succeed at it. I decided that two cake layers would be sufficient and cut into the third layer for a taste. I drizzled a bit of the still-liquid ganache on it and popped it into my mouth.

The faintest metallic taste lingered, burned on my tongue and I thought, slightly panicked that I might have forgotten the sugar? But, no, I remembered putting in the sugar. I took another bite and let it sit on my tongue and, still, it burned slightly. Shit, I thought, Was the cake flour old? Is that possible? I took another bite and this time spat it out into the garbage can.

I opened the cupboard door and gazed at my cake-making shelf, at the flour and vanilla extract, the sugar and the baking so--holy shit. The baking POWDER that I used was actually baking SODA. Baking soda is usually in an Arm and Hammer box, right? For some reason, we have a round can of soda and I just grabbed it and used that. And because The Husband (the Second) makes pancakes each and every Sunday morning and used the baking powder ALL UP and didn't tell me -- well, I don't want to blame him.

The fact is: I've lost my touch. My skills are clearly rusty, and now I've got to get busy and make another white cake.

Wish me luck.

Saturday, May 22, 2010

Is anyone out there?

I'm playing with my blog. I like the look of the black and white blog, but I'm not sure if it's right for mine. Opinions? Frankly, I'm tired of the way my blog looks and want to shake things up.

Car Wash, Anyone?

Friday, May 21, 2010

And the Winner

of Bonnie Rough's beautiful new memoir Carrier: Untangling the Danger in my DNA is

Congratulations! Please email me your snail mail address!

And don't forget to visit over at Hopeful Parents!

Book Giveaway Reminder and Hopeful Parents

I'm giving you a second chance to win a copy of Bonnie Rough's new memoir Carrier, by scrolling down to the interview I did earlier in the week and commenting either here or there. I'll use randomizer at 12:00 Noon, Pacific Time, and post the winner! It's a fascinating story, written beautifully -- 

In the meantime, I'm over at  Hopeful Parents today. I'd love it if you'd visit me over there!

Thursday, May 20, 2010

A Wall and a Quilt

I sat on the bed with Sophie today, trying to figure it all out. Her body seems as if it were out of alignment and uncomfortable. Her eyes look, to me, imploring. What is it, I say to her. I wish you could tell me.  I have the feeling that she needs to be stretched out, so I try, gently and as best I can to bend her stiff arms. I fold her legs in toward her stomach and rotate her hips. She strains a little and then relaxes a little.

I feel like we've hit a wall and we can't get through it. I don't want to break through, either. I want to slip through a crack. I want ease for Sophie. I wish her ease.

My dear friend and blogger Karen, of Gberger, sent Sophie a quilt that she made herself. In the note with the quilt, she wrote: 

I hope this brings comfort to you every time you touch it or look at it. It was made with much love --

Karen, both Sophie and I thank you with all of our hearts for this gift of love. The quilt is beautiful, as you are -- I feel as if I have a bit of you and a lot of your Katie stitched into this quilt, lying over my Sophie, bringing her ease.

Wednesday, May 19, 2010

The Mystery of Life

When we drove up the driveway this afternoon after school, Oliver and I stayed in the car chatting while Henry jumped out to open the door and go inside. Oliver finally stopped talking, opened his car door and exclaimed, My god, mom! That flower just appeared! It's like a magic flower! He was referring to a gladiolus at my next door neighbor's house.

We both wondered at how it could literally just appear, and Oliver bent over "like a detective" so that I could take his picture. He said this whole world is just mysterious.

Sophie's world needs

fewer seizures (and there have been a lot, lately) 
and more 


(Sophie with her music therapist, Katrina)

Tuesday, May 18, 2010

The Ugliest Party Room

Birthdays just don't end over here, and Oliver's has been no exception. He celebrated his "real" birthday on May 10th, but we had his party this past weekend, and it was at this party that I truly was grateful to be a blogger. The reason? Well, blogging, for those of you who don't do it, makes one especially mindful of detail and weirdness and story. During Oliver's entire birthday party, there was a part of me that was so mindful of blogging possibilities that I was able to not be driven mad by the circumstances.

That was a convoluted way to explain that blogging can sometimes help retain one's sanity.

Oliver chose to take ten of his friends to Ultrazone, a laser tag place, that I found by googling cheap laser tag. Ultrazone touted itself as the largest laser tag facility in the southland, so I signed up for the lowest priced birthday party package. My "party coordinator" told me that the party would be for two hours and that our party would have a private party room. Ultrazone would supply the pizza (that I bought), paper cups and plates and decorations. The boys would play two games of laser tag and have ample time for pizza, arcade games, and then birthday cake.

I should preface this by telling you that the night before the party, I pulled out my rusty pastry chef skills and made and decorated the cake. In case you can't figure it out (skills are very rusty!), the cake is the number 9 colored with various shades of blue icing and decorated to look like a rocket has taken off toward space. 

The laser tag place was in ALHAMBRA which while sounding exotic, is NOT. Alhambra is far, far away, deep, deep into the outer reaches of the southland. I'm already having anxiety typing out this description because taking twelve boys to Alhambra to play laser tag is just not my idea of a good time.

Ultrazone has an arcade with a number of horrible gun video games -- all of which my son played with a startling accuracy (perhaps he has inherited the sharp-shooter gene from his Swiss daddy?). All the boys played these incredibly loud, flashing, obnoxious games with a depressing intensity.

The din in the place was remarkable, the lights flashing and constant intercom voices calling people to the laser tag room an assault on the senses. I tried to hide in our "party room," but it was so ugly I found it an assault on my senses as well. The walls were a mustard-colored cinder block, and the overhead fluorescent lights were broken up by ripped-up acoustic tile. The decorations included six balloons tied to folding chairs, the predominant color being gold. Our party coordinator was named Edgar and while attentive and nice, even Oliver said he was weird. The paper plates were those white picnic-style ones and the cups were styrofoam. Evidently, green is not a concept that has hit Ultrazone, yet. I commented to one of the boy's mothers that it was easily the ugliest party room that I'd ever been to. 

The boys, though, my sons included, were ecstatic. This place is cool! they yelled, dashing into and out of the world's ugliest party room, eating really bad pizza and sipping Sprite from a 2-gallon plastic bottle. I know that I sound snotty, but the place was so ugly it wasn't even retro.

What is it about boys and guns and laser tag? Do they have no sense of aesthetics? When does this sense develop? 

(those are plastic ivy vines over the door leading to the sacred inner chamber where the laser tag is played)

and here we have glowing plastic fire pots, adorned with more plastic ivy

I was miserable, except for the moment when Oliver blew out the candles of his cake. 

It wasn't only because I love my boy and was happy to see him happy but because I knew the party was just about over.

Monday, May 17, 2010

An Interview and a Giveaway!

I have been reading the writer Bonnie J. Rough's charming and evocative blog The Blue Suitcase for some time now and was very excited to receive a copy of her new memoir Carrier: Untangling the Danger in my DNA. I'm in the middle of reading it right now and have to say that it is a moving, riveting read and one that I can hardly put down. As the carrier of a rare genetic condition, Bonnie faced a difficult decision when she and her husband decided to start a family. The book grew out of Bonnie's wish to untangle the complicated details of her family's past, and, as the back of the book says, "Bonnie and her husband find themselves faced with a modern moral crisis."

I am excited today to post this interview with Bonnie and also offer a copy of her book in a giveaway! Please leave a comment below and I will draw a winner this Friday. And to buy a copy of her book, go on over to your local independent bookstore or my blog sidebar where I've posted some of my favorite books. You can click there and go directly to Amazon, I think.

What is the genetic disorder you carry?

Bonnie: That’s almost always the first question I’m asked. People see my dilemma right away—whether or not to risk having a baby with a disorder—and it’s natural to think the answer hides in the set of symptoms. How bad do they seem? The main symptoms of hypohidrotic ectodermal dysplasia (HED) are sparse hair, few teeth, no sweat glands, and a slightly unusual facial appearance. There are often secondary problems, including chronic respiratory sickness and other kinds of infection. HED is X-linked, which means that female carriers (like me) have no symptoms, but may give birth to sons who are fully affected. Compared to many disorders, HED may not sound so bad—and for some affected individuals, it may not be. That was part of what confused me initially, motivating me to learn more about people in my family who had suffered from the disorder—especially my grandfather, Earl. Researching his life story, I discovered how the disorder turned a brilliant man into a tragic figure. It became clear to me that even if HED isn’t directly life-threatening, it can be profoundly life-altering. Dan and I had to decide how far we’d be willing to go in order to keep our children’s lives free from that risk.

What choice did you have?

Bonnie: That question is exactly what makes Carrier so timely. I belong to the first childbearing generation with access to genetic testing for a vast number of known disorders. That means before conceiving, parents can have their DNA tested in order to learn what problems we risk passing to our children. From there, if biological children are still desired, we have some remarkable yet troubling options. There’s in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD), in which doctors genetically screen test-tube embryos and implant only healthy ones in hopes of creating a successful pregnancy. For many couples, this process is too expensive, too physically grueling, or too emotional. Another choice is to become pregnant the usual way, and then to test fetal cells in the 11th week of pregnancy with chorionic villus sampling (CVS) or in the 15th week via amniocentesis. But then, if test results reveal a problem, a couple might face an excruciating choice.

Like every genetic disorder, HED is relatively rare—it affects about 1 in 10,000. What does Carrier offer readers without known genetic problems in their family?

Bonnie: Carrier is about a modern-day couple grappling with the past in order to take positive steps into the future. This is a journey that almost everyone experiences at some time in life—especially when parenthood looms on the horizon. Carrier is the story of a truthful person searching deeply to find the best solution for a heart-wrenching problem. The specifics of the predicament are mine, but the journey is universal.

How do you expect people to react to this book?

Bonnie: Before Dan and I made our choices, I published a personal essay about our predicament in The New York Times. I was totally unprepared for the flood of e-mails I received. Women and men from all over the country wrote to share their stories. Many offered me comfort, and others thanked me for the solace I had given them as they grappled with their choices. About half of the people who wrote me thought it was perfectly clear how Dan and I should proceed to start a family. One called our in-vitro option a “no brainer.” Many said adoption was the clear choice for us. Others thought we should skip testing and allow fate to decide. Quite a few readers didn’t care what we did, as long as we ruled out abortion. I think the huge response showed how many lives are touched by these issues now. And most importantly, the range of reactions proved that these decision-making processes are deeply personal and unique within every family.

In your memoir, in addition to your own voice, you write in the voices of your mother and your grandfather. How do you justify this as nonfiction?

Bonnie: As I looked ahead toward starting a family, I felt a vital need to examine the past. I needed to understand my grandfather’s experience of HED (he died at age 49, when I was a baby). I also I wanted to explore how witnessing her father’s misery shaped my mother, Paula, as a person. Every family has its unspoken stories, and with my mother’s help, I worked very hard to bring our past to light before I made any choices about having my own children. Using the voices of Earl and Paula alongside my own narration gives Carrier the perspective and empathy I found in the course of my research. Obviously, I had to use my imagination to recreate voices and scenes from the past. But when I was writing Carrier, I wasn’t inventing a new story, which would have been fiction. On the contrary, I focused on recovering a particular story—one that began shaping me and my children long before our time. 

Saturday, May 15, 2010

Saturday Illumination

Most of us have probably harbored negative feelings about our physical appearance at some point in our lives. When these feelings lodge and fester, they deplete our spirits. I see Guidotti’s images as a visual reminder to be kinder to ourselves and more generous and joyous in how we construe beauty in all its manifestations.
--Nancy Rosenbaum, Associate Producer of Speaking of Faith with Krista Tippett 

This is a quote from a recent Speaking of Faith segment entitled Embracing the Beauty of Genetic Difference. You can read more and watch a remarkable narrated slide show and video by clicking HERE.

Friday, May 14, 2010

Bloggin Blunders

**Update Below

So, almost two years ago I posted something about an experience I had flying across the country in a plane that carried the dead body of a soldier from Iraq. I had only recently begun writing the blog and had very few readers. I knew it was going to be a controversial post but I was unafraid to post it because honoring dead soldiers or honoring soldiers at all, to me, is a conflict. It's not a conflict for me to honor a person who has done great things, and I'm certain that many, many soldiers have done great things. I have to say, though, that I have always, always felt uncomfortable singling out soldiers as somehow worthy of honor just because they're soldiers. I know this is a messy thing and perhaps with this post I'll really offend someone given the numbers of readers that I have now. Today, ironically, I got a comment from that old post and it stirred me up, helped me to want to clarify my own feelings. If you're at all interested, you can read the post HERE.

This is the comment that I got today from someone named BCC:

I think you tragically misunderstand the nature of the oath a soldier takes. It is to defend the country and the Constitution. And that means going where the President sends him. He chose to defend you and your family, the President chose to deploy him to Iraq. It behooves you to understand the difference.

I find your post very offensive. I will nonetheless refrain from saying something very offensive about YOUR child, despite the callousness with which you disregard the lives and sacrifices of the children of others. 

Hmmmm. My heart beat a little faster when I read those lines. I went back and re-read the post. I winced a bit because it was basically a complaining post, one that I wrote after a horrendous trip home with Sophie from a very difficult family vacation. I thought I had explained, though, that there was a moment when I realized how petty my own feelings were, especially compared to the family of that dead soldier. I admonished myself internally and surrendered in that moment. 

But that moment of surrender, when I put a face on that dead soldier and thought about his parents, doesn't obviate the fact that I believed then and still believe in the utter senselessness of that war. That war was and continues NOT to be one where my "liberty" and "freedom" is being defended. The thousands of American soldiers and tens of thousands of civilians who have died in the almost seven years of that war have, I believe, died for no good reason. I concede that this view is offensive to many, but it is what I believe and does not demonstrate a disrespect for any soldier personally. I understand what BCC means when he explains the soldier's oath to "defend the country and the Constitution." I understand that once a soldier makes that oath he is bound to do whatever his President tells him to do and to go wherever he is told to go. I get that, but I don't necessarily believe that's an honorable thing in and of itself. I am grateful to those soldiers who have fought and truly defended and even won our liberties but I am not blindly grateful. Whenever killing is involved, I'm not sure there's much to be grateful for. This is a messy thing and I guess I refuse to recite or even acknowledge patriotic platitudes.

And so, BCC, if you continue to read my blog, I apologize for offending your sense of patriotism. I can see why you thought I was callous toward the dead soldier -- I was callous but I thought I had acknowledged that in my words. The death of that boy was a tragic, senseless waste.  As for your very nicely written denunciation of my patriotism, well, I have to say that as defined by you, yes, I am unpatriotic. Perhaps that makes me uniquely American, no?

**UPDATE: Evidently, commenter BCC has been combing through my posts for literally hours (BCC, if you're reading this, your activity is evident on my statcounter), and looking for all "unpatriotic" comments that he/she feels compelled to comment on, sometimes quite nastily. While I respect your right to read and comment freely and, of course, to express your opinion and judgement of myself, my children and my husband, I would recommend not reading quite so assiduously and therefore protect your mental health. I only say that as a like-minded person of the polar opposite who has spent great amounts of wasted time reading the blogs of those whose views are in such opposition to mine. It generally makes me sick to my stomach and I can only imagine how you feel right now after spending more than three hours perusing my own twisted views.

We're on Hold

Thank you for your thoughts and prayers and dances! The IEP went well -- it's not signed, yet, which means there are unresolved issues, but we were able to "transition" Sophie to her new school relatively easily. I smiled through the haze of bureaucracy and kept my mouth shut for the most part when it was tempting to open it but appropriate not to. I realize a lot of this sounds cryptic to those of you who don't navigate the special education system, but if you'd like an inkling of what it's generally like I'd compare it to a visit to the DMV in a big city, waiting for someone to answer your question at an understaffed Kmart, putting together an enormous swing set with an enormous color-coded instruction sheet and 6pt. type, navigating the parking lot of the Costco on a Saturday afternoon in the Valley of Los Angeles, boarding the ferry from Naples to the island of Capri with no ropes to separate those getting on and those getting off, going through a Statement of Benefits from one's insurance company for an overnight EEG telemetry hospital visit, finding the one small round Lego in an enormous bin of Legos, and winding up twine to create the world's largest ball of twine, ALL TOGETHER.

Afterward, I went and had lunch on a friend: a cup of white bean soup and an open-faced sandwich of ricotta cheese, bits of chopped figs and a drizzle of honey. I'm a lucky, blessed person, I think.

Interesting Exciting Peculiar

William Blake

I'm headed off to Sophie's IEP this morning and thought I'd ask all of ya'll to say a prayer, do a little dance, send out the good thoughts and otherwise be at my back as I negotiate with the Los Angeles Unified School District for Sophie's needs. I'd be much obliged --

Instead of griping about the process, I'm going in hopeful with the acronym IEP standing for interesting, exciting and peculiar (as opposed to inconclusive, excruciating and purposeless).

Thursday, May 13, 2010

Love Rests on No Foundation

This arrived in the mail over the weekend:

The amazingly talented and beautiful soul Adrienne, of Regenerations made it for an online auction benefiting 

Oaxaca Streetchildren Grassroots, hosted by Rebecca of recuerda mi corazon. Each artist created a shrine and donated it to be auctioned. It was difficult to choose which shrine I would bid on, until I saw this one of Adrienne's. 

The mermaid is my Sophie and that's her pearl of wisdom. I didn't even know that Adrienne had made it with Sophie in mind until later. Can you even imagine how that makes me feel? I can't even write about it, it's that powerful.

The shrine is crafted from re-purposed materials, and it's simply beautiful. Here's the back of the cigar box painted in the most intense colors:

These photos don't do nearly enough to demonstrate the beauty but they give you a bit, right?
And to think that I "met" Adrienne through blogging and that she has never "met" me in any other way other than reading my blog and that she has "gotten" Sophie, exactly the way I see her. I guess that's not only the beauty of blogging but the beauty of art.

Thank you, Adrienne for this inspiring and moving art.
And thank you, Rebecca, for hosting such a generous event.
(and now, get yourselves over to these women's wonderful blogs and check out their work -- the links are above!)

Wednesday, May 12, 2010

Driven Crazy or Crazy Driving

I woke up this morning fully intending to craft some kind of meaningful post here. I also woke up intending to finally begin exercising hard. I woke up determined that I wouldn't yell at the boys to hurry up, get their teeth brushed, get their shoes on and make their beds. I woke up knowing that the whole day stretched in front of me, with all three kids in school and no appointments or conference calls for my job or grocery shopping to do.

It's now about noon and I've done none of those things. The boys were their usual desultory selves in the hour before their carpool came and I yelled a few times. Hollered, really, because it wasn't like I was mad. Boys generally like to look out the window at the squirrel hanging upside down or fiddle a bit with their PSPs in between the necessities of life. Those parenting books that tell you not to yell, not to bargain, not to bribe -- well, they're full of shit.

Sophie had a big seizure and fell back asleep so I dropped her off at school, finally at 10:30. If I don't exercise before 9 am, well, let's face it, I'm not going to exercise. While she slept, I didn't do anything but talk on the telephone with an LAUSD bureaucrat. There's still much to iron out for Sophie's transition to a new school in the fall, and with her IEP coming up on Friday morning, lots of anxiety. I recently reread a bit in Barbara Gill's Changed by a Child: Companion Notes for Parents of a Child with a Disability this passage:

Dare you see a Soul at the White Heat? 
Then crouch within the door -- --Emily Dickinson
Here is what a few mothers have said about their experiences when trying to secure an appropriate education for their child.
Inga: I felt I was going crazy. Only once before in my life had I felt so low, and that was the year my mother died. Sherrell: I was constantly depressed. I gained twenty pounds; I couldn't focus on anything. Jennifer: For the entire year after they threatened me, I did not go to school unless I absolutely had to, even for concerts or programs. Every time I walked in the door, my eyes would fill with tears. Andrea: In order to avoid doing what we wanted, they attacked us at the meeting. I was completely unprepared and totally humiliated. Even now when I think about it I feel ashamed and enraged. Toni: I feel the teachers and I are rivals instead of partners. The message I get is that they know what's best for Tom, and that I am not doing everything I should be doing for him. Brenda: My experiences as a teacher led my husband and me to adopt two boys with disabilities. The only times I've regretted doing it have been in relation to school -- the years when things were horrible at school.
These women are describing anguish, suffering and despair at the deepest level. They are not an isolated, unstable few who cannot work with other people or solve problems effectively. They are diverse in backgrounds and education, and what they say is representative of the experience that mothers have with school systems. Something is clearly very wrong.
Today, if I am involved in a struggle at school, I will know that I am not alone and I am not the problem. I will recognize that I am engaged in a real battle in which my child's future and my mental health are at stake. I will get help. When I go where my risk of injury is high, I will protect myself in order to protect my child.

Most days I feel in control and empowered -- by my work, by my children, by my husband. On days like these I feel like if not already completely broken, I'm falling apart.  Typing out the above words helps (especially the Emily Dickinson quote!), because it affirms that THIS IS HARD. I'm not sure why I need an almost constant affirmation that I am indeed coping the best way I can, but I'm grateful that I got it.

Monday, May 10, 2010

The Oliver Dessert (graphic photo follows)

May 10, 2001

Last night, I bent over Oliver to kiss him good-night. He said, This is the last night I'll be eight years old.

Yes, I replied, and this is the last time I'll kiss my eight year old son.

Nine years ago today, I gave birth to my beautiful third child, Oliver, who I liked to call my dessert. It doesn't seem possible that nearly a decade is gone, and as each year passes I think to myself, hoping against hope,  he's still really little, he's only six, he's only seven, he's only eight. I'm not sure I can say he's only nine! He's NINE? I just can't believe it, really.

In lieu of a long birthday celebration, I'll give you this link to click because I think I captured my Oliver, my dessert, last year quite well.

Happy Birthday, Big O. I love you so!


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