Thursday, May 31, 2012

Can we just look at some peonies today? (UPDATE)

***Update: Peonies are NOT readily grown here in La La Land. I believe they need a deep freeze, something that I myself have gladly not experienced in over fourteen years. These beauties were bought for $6.99 at the Trader Joe's down the road. I exclaimed over them like I do every year they turn up and every day that I see them opening ever outward. They're feminine, blowzy, sexy -- I love them. I wish I was one.

Wednesday, May 30, 2012

The boy's a blur

He'll be fourteen years old this summer and has grown so much the past school year that he's nearly blurry. This past weekend, one of his baseball coaches sat with me at a cook-out and told me what a fine boy my Henry is. I can hardly talk about Henry without gushing, so I held myself back. But when the coach told me that Henry had told him that his parents (that's me and The Husband) were the hardest working people he had ever known, my cup spilled over and the whole universe blurred.

Doc Watson, President Obama, Bob Dylan and Mary Moon

If you had told me in 1973 that in my lifetime I would live to see a black president put a prestigious award around the neck of a 72-year old Bob Dylan on the same day that Doc Watson died, well, hell. I don't even know what I would have thought but it would probably have been something like, "Far out."Which, actually, would have been pretty appropriate.

Ms. Mary Moon from Bless Our Hearts 

Sally debunks bullsh$%# (cause I can't put Sally's name in the same line as a curse word!)

Sally of Maggie World wrote a letter to the editor of The San Francisco Chronicle about yesterday's article discussing impending cuts to California Children's Services. It's short but sweet. You should read it, and then go over and visit her blog Maggie World, where she chronicles life with her hilarious, wonderful daughter Maggie.

And then go out and make a stink of your own!

Tuesday, May 29, 2012

Smells Like Bullshit, Part 3,456,789

There's not much meat on it anymore, but I've got a bone to pick. Maggie's mother posted this article on Facebook yesterday, and it riled me up. Actually, it didn't rile me up as much as make me sigh and grit my teeth and begin percolating. In a nutshell, California Children's Services Medical Therapy Program that serves disabled children, is on the chopping block again, and nearly 5,000 children will lose their physical and occupational therapies. The move will be carried out as part of a larger plan to balance the California budget which faces a $15.7 billion shortfall. Families making over $40,000 are being asked to pony up and pay their share.

Everyone has to sacrifice something, right? The policy-makers are said to have to make "very difficult decisions," but I smell bullshit. According to spokeswoman Michele Stillwell-Parvensky from the non-profit Children's Defense Fund of California, these cuts should be considered "cascading cuts, that have hit children -- particularly disabled -- in recent years as federal, state and local governments withhold money from school, health and childcare budgets." Just like the bone picked dry, the backs of these children with disabilities and their families are bent under the burden of incremental cuts made in the service of the "larger good."

I look around every single day and really don't see the sacrifices called for as being equally distributed. I see people driving enormous new vehicles that probably cost nearly $100.00 to fill up with gas that lasts for less than twenty miles. Many of these people believe it to be an American right to drive whatever car they desire. I see people buying multi-million dollar homes that demand enormous amounts of energy to heat and cool, their properties used as tax write-offs. Presidential contender Mitt Romney evidently has a three million dollar house in the tony coastal town of La Jolla that he is looking to tear down to build a bigger, eight million dollar one with a car elevator. But hey, here in America, if you make that kind of money, it's your right to spend it as you choose. And park it somewhere that you choose, too. The movie studio that produced The Avengers is paying one of its stars, Robert Downey, Jr., over $50 million for his role in the blockbuster, a movie that has pulled in hundreds of millions of dollars since it opened. And then there's the trillions spent in the decade-long wars in Iraq and Afghanistan, the madness of bombing people and children, sacrificing young men and women with the fake objective of liberty and justice for all.

I'm not going to belabor a point that I've made over and over again. Balancing the budget on the backs of disabled children and their families as "shared sacrifice," is bullshit in this country. And if we can't come together as a people who know lives of the greatest economic and military power and luxury that the world has probably ever known and make cuts and sacrifices elsewhere, well then, we're pathetic.

Monday, May 28, 2012

We're so bored

I'm lying on the bed reading a short story by Maile Meloy in The New Yorker, keeping one hand on Sophie's back so that she doesn't swing forward and off of the bed. Despite their ages and sizes, both boys are hanging out with me, lying on the bed and on the floor. When Henry shoves the dog by accident, his nails dig into Oliver's mouth as he lies on the floor so then Oliver shrieks, Sophie's hums grow louder and Henry insists that he didn't do anything. I lay my magazine down and say please, figure out something to do that doesn't have to do with electronics. Please.

Memorial Day with Kenny, Wilfred and the Old Lie

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 gas-shells dropping softly behind.
Gas!  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
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

Wilfred Owen, 1917

May all those being honored today rest in peace, but may they be the last to lose their lives in war.

Sunday, May 27, 2012

In lieu of a Dodgers game with The Boys and The Husband, Sophie and I

went to Venice Beach and hung out with some friends.

Dude flying his freak flag that I parked right next to

Moonrise Kingdom

is the best Wes Anderson movie to date, I think. I saw it yesterday with my good friend and floated out afterward, grateful for that artist's unique and hilarious sensibilities. Here's a funny clip to get you excited about it:

When you see a movie at the Arclight Cinemas in Los Angeles, you often get the chance to see some of the props to the latest movies. Yesterday, they had some of the costumes and props from Moonrise Kingdom. I know it's sort of goofy -- and really no different than taking photos of kittens or animals at the zoo -- but indulge me:

Costumes worn by two protagonists


And if you're too high-brow to enjoy those, there are these photos of Red Vine Licorice Art, not in the movie but on display at the theater:

and up close:

I'm not kidding -- that's some fine art and another of the benefits of living in the city of angels.

Happy Sunday!

Saturday, May 26, 2012

The Downside of Urban Living

Sometimes I resent the kind of parenting discussions these kinds of billboards provoke. I wish that I lived in the halcyon days when I might have barked, That's a dirty sign, boys. Don't even look at it because you might go blind.

In addition, I wish I'd gotten the price of gas in the photo out here on the freewheelin' west coast. Last time I filled up my fairly eco-conscious vehicle, it cost me $75.00.

I don't know which is more obscene, frankly.

I do love the word frank -- no pun intended.

Nod briefly and become a cabbage

Sonoma, 2009

The Art of Disappearing

When they say, Don't I know you?
say no.

When they invite you to the party
remember what parties are like
before answering

Someone telling you in a loud voice
they once wrote a poem
Greasy sausage balls on a paper plate.
Then reply.

If they say We should get together
say Why?

It's not that you don't love them anymore.
You're trying to remember something
too important to forget.

Trees. The monastery bell at twilight.
Tell them you have a new project.
It will never be finished.

When someone recognizes you in a grocery store
nod briefly and become a cabbage.
When someone you haven't seen in ten years
appears at the door,
don't start singing him all your new songs.
You will never catch up.

Walk around feeling like a leaf.
Know you could tumble any second.
Then decide what to do with your time.

Naomi Shihab Nye

Friday, May 25, 2012

Carrot Cake and Cocktails

I made this carrot cake this morning, after I dropped the kids off at school and before I accompanied The Relative to an oncology appointment. I frosted and decorated it this afternoon. Now I'm off to deliver it and have a cocktail -- or two.

All is well.

Why is it raining?

That's what I'm thinking this morning at 9:56 AM. Rain in late May in southern California is unsettling. The sky is gray and the wind is rustling through the palm fronds. Do you know what that sounds like? There's a carrot cake in the oven, the beds are made and the children are at school. I'm contemplating buying a lawn mower and making my strapping boys mow the lawn from here on out. Just like rain in late May, mowing your own lawn in southern California is an anomaly. Jesus has been doing the yard work (other than gardening) at my bungalow for nearly fifteen years -- Jesus, the gardener, practically part of the family -- probably more a part of the family than that other Jesus. Jesus has a huge business, I'm certain, and it probably won't make much difference if I up and tell him that my two strapping boys will be mowing the lawn from here on out. I'll ask him to come every month or so and do the heavier yard work -- the weed whacking, edging, the hauling of fallen palm fronds. He'll still be doing all the yard work for the big mansions and the people who can't be bothered. I remember doing yard work as a kid growing up in Atlanta. We lived in a big house with an even bigger yard. My father taught my sisters and me to mow the lawn because he had no sons. My sister and I had the mowing down to a system -- The Front Hill, The Side Yard, The Side Side, The Back, The Back Side. My father might  as well have had a whistle and a megaphone given how exacting his standards were for Mowing the Lawn. We had to go carefully around the trees and not miss any spots. We had to let the grass fly out and then rake it up, dump it in a wheelbarrow and then wheel it into the woods behind our house. We begged him to let us bag it, and to this day I don't know why he didn't let us. Sharp shards of southern green would stick to the sweat on your skin and sometimes the motor would die and you'd have to stand there and pull that damn cord over and over to re-start the engine. At one point, mowing the lawn caused me to have allergy attacks, so I got to stop doing it. My sister called them "allergy attacks," and I think she was very resentful. One day, it was snowing lightly in Atlanta in the early winter, an anomaly, just like rain in southern California in late May, and my father made her mow the lawn.  I think she swore as she cranked up the mower and my father grounded her. I wonder what the boys will do when I start making them mow the lawn? I wonder why it's raining? What would Jesus do?

Thursday, May 24, 2012

Farmer Elizabeth

So, we have a break in the big city life that I usually describe. A tiny little bird lay on the patio outside the garage apartment in my backyard, and in lieu of The Dog eating it, we picked it up with an old tee-shirt and debated what to do. We looked up and noticed a nest practically perched on the edge of a light fixture, and on closer inspection, saw the two little birds, above, nestled together, there. The whole thing was kind of nasty, to tell you the truth. The little bird had clearly either fallen out or been pushed out by its siblings or Medea, its mother. What to do? We called over Big Strong Manly Neighbor, who inspected the surroundings and agreed that putting the baby back in the nest would probably be futile. I almost don't want to type out what we decided because it seems like heart of darkness material, particularly for those of us who aren't comfortable with -- ahem -- the natural world. We left the little bird in the tee-shirt, on top of an ivy-covered wall that is often frequented by The Neighbors' cats.

I'm going to listen to this, but what would you have done?

A Lesson

Sudden Unexpected Death in Epilepsy (SUDEP) is now recognized as the leading cause of mortality associated with epilepsy, outside of status epilepticus and underlying etiologies. The general level of awareness of SUDEP has risen considerably in the last several years, but the general public is still largely unaware of just how devastating a diagnosis of epilepsy can be. In fact, not even professionals devoted much attention or research to it until the early 2000s.

Risk factors for SUDEP include the early onset of seizures, frequent generalized tonic-clonic seizures (those previously known as "grand mal"), young adult age, poor compliance with an anti-epileptic drug (AED) regimen and multiple AEDs used. Patients with epilepsy have a significantly higher rate of mortality than the general population, and SUDEP accounts for 8-17% of the deaths of people with epilepsy.

I know of seven children and young adults whose death was determined to be from SUDEP.

We can all manage our fear (and trust me, I do fear) by educating ourselves and advocating for increased research about SUDEP. In late June, Partners Against Mortality in Epilepsy is holding a conference about SUDEP in Chicago. You can read more about it here.

Now I'm going to have a swig of vodka.

Wednesday, May 23, 2012

LA - 5:57 PM

Sirens are screaming, helicopters wander in circles over the neighborhoods, the wind has picked up, the sun is shining so brightly that we're all squinting inside, the palm trees are bending, Sophie is humming, the boys are squabbling, I'm thinking about dinner and wondering whether it's only in quiet waters that things mirror themselves undistorted.

Venice Boulevard Pink

I drive the boulevards of Los Angeles daily, and sometimes I'll drive nearly the entire boulevard from west (the ocean) to east (my neighborhood). Yesterday, as I returned from the acupuncturist's office along Venice, I marveled at all the urban sights, my mindfulness ignited, perhaps, by needles. I stopped the car a couple of times and found a pink theme. Some might think of this as urban blight -- I found it beautiful.

The inimitable Los Angeles River (yes, it's called a river)

This apartment building was nowhere near the water, much less an island, -- in fact, living on Venice Blvd., somewhere in the middle, seems pretty bleak to me, but with the large boat parked in front, I found it incredibly hopeful.

Tuesday, May 22, 2012

A perfect poem,

at least for me. Thank you beautiful Vesuvius for bringing it to light --

Henry and Sophie, Hilton Head Island, 2010

First Lesson

Lie back daughter, let your head
be tipped back in the cup of my hand.
Gently, and I will hold you. Spread
your arms wide, lie out on the stream
and look high at the gulls. A dead-
man's float is face down. You will dive
and swim soon enough where this tidewater
ebbs to the sea. Daughter, believe
me, when you tire on the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light-year
stars, lie back, and the sea will hold you. 
Philip Booth

When profanity makes me laugh --

really, really hard.

Check this out:

F$%# Your Noguchi Coffee (thanks, Gretchen, for the heads-up on this!)

Monday, May 21, 2012

Eighteen Years

May 21, 1994 - Mollis, Switzerland

I don't want to throw in my lot with the marriage-is-hard-work crowd, the ones who suggest you see a couples counselor before you send out the invitations, who seem to support the entire advice-book industry. I was never one of those women who tell you that their spouse is their best friend, that they're always on the same page. I feel like you're ahead of the game if you're even in the same book.
 Anna Quindlen, Lots of Candles, Plenty of Cake 

Happy Anniversary to The Husband, with gratitude for being in the same book for eighteen years.

Sunday, May 20, 2012

Eclipse through a car window

A Trip to India in between Baseball

Yesterday, I made a coconut layer cake with cream cheese frosting, in-between baseball games, for an Indian-themed birthday party. I googled Indian themed cake decorations for inspiration, and came up with this:

And because no cake is complete without baseball, here's a picture of Oliver running toward third base:

and I'd show you the shot of Henry, breaking his hitting slump with a first base drive, but I don't have the amazing photograph, yet (taken by a father who's a professional). So, hold your breath for that one, and enjoy your cake.

Happy Sunday!

Saturday, May 19, 2012

From Stephen Kuusisto's blog Planet of the Blind:

I don’t hold with the Atlantic Monthly’s recent article that proposes we are lonelier because of facebook. I think that people with disabilities will attest, overwhelmingly, that connections are now possible for those of us who have a hard time getting around. The vocabulary of life itself.  
Czeslaw Milosz wrote: “Where does humility come from? From sitting down and putting little signs on paper with the hope of expressing something.” Life itself. 

I'll venture to say that this holds true for those of us connecting through blogs, particularly those of us doing the extreme parenting. When Sophie was diagnosed in the spring of 1995, I didn't even have a computer. I had a friend in nursing school who would get me copies of medical articles from the library, available only to those in school. I made phone calls to people who knew people who knew other people. I found out about the ketogenic diet in People Magazine. I called doctors in Canada and left messages on answering machines. I also cried alone, screamed in a huddle on the bathroom floor, the water pounding down and drowning my screams while the baby screamed in her crib. My little signs on paper stayed on the paper, and how much better, how really sustaining it has been to have you. And you. And you.


For those of you new to the old blog, I make cakes. I make cakes for money. And pleasure, sometimes. Yesterday was one of those days. Pleasure and money, a cake for a sweet young lady and her equally sweet mama.

The aftermath:

Friday, May 18, 2012

Rear View: No Regrets

The Anthem of Fear

This post is about fear.

This post is about the rapid acceleration of the heart.

This post is about dread and the sickness unto death.

This post is about the butterflies beating their wings against your stomach walls.

This post is about an envelope that comes in the mail from Anthem Blue Cross insurance company.

There was nothing of note in that envelope this time but jibber jabber information about something or other.

My body is an instrument of exquisite sensitivity, meant for better things, I hope.

Something's wrong if a plain white envelope with a logo on it  prompts such a visceral reaction, and I don't think the problem is me. I don't know what to do about it other than to practice more yoga, but being mindful of a piece of damn paper with ANTHEM pulsating wildly and mockingly my way is really, really difficult.


Thursday, May 17, 2012

Careening Around

I felt like slamming my foot on the accelerator today, go out blazing, twisted metal flying and all the years of gun-slinging, standing solid against a sea of arrows, to hell with the drama, the manufactured drama when real drama is held like a crystal ball in my palm, shimmering beautiful, so that's the way it will all turn out. When Oliver got into the car after school, the metal twisted further so he grabbed three licorice I said only three and a plastic straw and he chewed that straw all the way home his fists pumping Mom you look like one of those movie stars with those glasses.

Wednesday, May 16, 2012

Laundry and Blackbirds

Columbus Avenue and 63rd Street, looking west, New York City, 1935-1941
via  NYC Municipal Archives

Because it is windy, a woman
finds her clothesline bare, and without rancor
unpins the light, folding it into her basket.
The light is still wet. So she irons it.
The iron hisses and hums. It knows how to make the best of things.
The woman’s hands smell clean. When she shakes them out,
they are voluminous, white.
All night my hands weep in gratitude
for little things. That feet are not shoes.
That blackbirds are eating the raspberries. That parsley
does not taste like bread.
From now on I want to live
only by grace. In other words, not to deserve things.
Without rancor, the light dives down
among the turnips. I eat it with my stew.
Today the woman's hands smell like roots. When she
shakes them out, they are voluminous, green.
All day they shade me
from the sun. The blackbirds have come to sit in them.
Since this morning, the wind has been enough.
Susan Mitchell
via Karen Maezen Miller

I was messing around with Instagram on my Android (who knew these words would be understandable in our lexicon?) this afternoon, and my youngest son took the photo -- hopefully, yours will be better, but send them to me as soon as possible. I have a dearth of FATHERS, so please tell those you know about the project -- post about it, put it up on Facebook!

For further instructions, see HERE.

Tuesday, May 15, 2012

Use Your Words

OK. Some of us have children who can't use their words because they have no words, are unable to speak or use alternative communication. Many of us use our words as literal spokeswomen for our children in the day to day care and advocacy for them. Many of us were writers before we became our children's mothers, our children's literal voices, and many of us continue to write -- not just as the voices of our children but so that our voices might be heard. Before I gave birth to Sophie and before she was diagnosed with infantile spasms, I was a writer, but it took me nearly ten years after her birth to put my pen to paper and my fingers to the keyboard and write again. It seemed impossible to me to write through my life, impossible to give shape to the chaos that had been unleashed with Sophie's diagnosis. I began to write again while attending a workshop at UCLA called Writing the Healing Story, led by a beloved mentor, Barbara Abercrombie. I began writing again and in the writing, I emerged, again -- the person I was, the person I am, the person I was meant to be.

Using words, I carved out a place not only for myself but also to give voice to my daughter who has no voice. I worked for many years on a memoir and then a few more on short stories. I began this blog nearly four years ago and met many like-minded people, mothers and fathers, those who had children with voices and those who do not, and I'd wager that most of them find the writing, the using of words, if not necessary to their very survival, then at the very least healing and centering. I imagine that even those for whom disability is not known find that writing is a way out of the oft-overwhelming life of being a mother.

I met Kate Hopper, the author of Use Your Words, A Writing Guide for Mothers, through this blog, I think, although like so many connections that are forged online, I'm not certain how I found myself on her own wonderful website and began to learn a bit about her family, her writing career and her teaching. Kate teaches writing online and at The Loft Literary Center in Minneapolis, where she lives with her husband and two daughters. She holds an MFA in creative writing from the University of Minnesota and has been the recipient of a Fulbright Scholarship, a Minnesota State Arts Board Grant, and a Sustainable Arts Grant. Her writing has appeared in a number of journals, including BrevityLiterary Mama, and The New York Times online. 

Kate Hopper

I'm excited to help Kate promote this wonderful guide -- it's the sort of book that you can pick up and start reading and stop reading and start reading, again, chapters and snippets and whole long passages. You can live your life while reading this book, distracted, even, and find something interesting or inspiring or useful. Kate includes really wonderful writing prompts for the more serious writers or even for those who think they can't write but have something to say and don't know how to say it. This is one of my favorite quotes from the book and reminds me, a bit, of how I began writing, again, so many years ago:

I think the easiest place to begin writing your mother stories is with a detail, an image. It was with one or two sensory details that I began writing my memoir: the image of my daughter writhing on a blanket on her open warming bed; the sickly-sweet smell of the NICU. These are the details that helped me dive into my narrative.

Use Your Words is not just a book for those of us struggling to write of our children's disability. It is a book for all mothers, new mothers and old mothers and those who want to shape their voices and lives. In fact, I have a contest for you and a chance to win not only a copy of Use Your Words but also a one-hour phone consultation with Kate Hopper and publication in Literary Mama's online magazine. To enter the contest, send me an essay of 600 words or less, using Kate's prompt below. The deadline for the contest is June 1st at 8:00 am California time! I will pick my favorite of your essays and send it to Kate for a chance to win the Grand Prize. My winner will also receive a free copy of the book. Sharpen your pencils or your fingertips and use your words:

Writing Prompt:

Sensory Details as a Way to Begin 
Think about the time when your child (or one of your children) was born, when she first arrived home, or even before she was born. If you adopted your child, maybe you want to focus on the first time you saw her photo. Is there a certain smell, sound, taste, texture, or picture that comes to mind? Start with that. Write it down. What other concrete details do you remember? Let your mind wander. Jump from image to image. Try to use as many sensory, concrete details as you can. Don’t pick up your pen—just keep moving it across the paper—and don’t worry about grammar or spelling.
If those early days and months feel too far removed, choose another period in your child’s life that seemed particularly vivid to you, and begin writing details from that time.

**Send your completed essays to my email: elsophie AT gmail DOT com


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