In His Element: Dispatch from the School of Revolution

We drove out to Malibu Canyon today and attended a very cool class on aboriginal hunting, trapping and stalking. It was beautiful country,  and while I had thought I'd drop Oliver off and do some work, I found myself, instead, walking and hiking through the brown and golden fields, past herds of deer in the quietest place you can imagine. I took lots of pictures, more of which I'll share later.

As you can imagine, The Big O is in his element. I'm warming up in the car -- hence, the weird formatting. 

Fresh Fruit from Jesus

I'm getting up at 5:15 three mornings a week to take Henry to his baseball conditioning practice at his high school. We drive in the dark on wide, empty Los Angeles freeways, and on the way back I see the rosy fingered dawn, as Homer put it. This morning, I climbed back into bed and fell asleep for two more hours. When I woke, the Husband was getting Sophie ready for school, so I helped him out a bit and then sent them on their way to her school. Sophie is doing so well on this CBD tincture -- so well that I hesitate to jinx it by talking too much about it. Funny how that doesn't work in reverse  -- if we talk enough about our misery, we think it'll somehow disappear. We rant and rave, let it out, let it out. The trick is to hold both, the gratitude and the misery and let them fly.

A Night Out for Poetry and Prose at Stories in Echo Park

I hope to see some of ya'll there!

Dispatch from the School of Tradition

Few sons attain the praise Of their great sires and most their sires disgrace.

from Homer's The Odyssey

I know you don't hear much about Henry, and that's because he's moving through the world sort of effortlessly. He's been my sunshine boy since the moment he was pulled from me, a giant ten pound baby boy with hands and feet like a puppy's, and a big round head. He's now almost 5'11" and skinny as a rail with those sinewy arms that seem to appear out of nowhere, a dream of a young man in every way. This year he's going to a very traditional Catholic high school and is, of course, completely happy there. Despite my various lectures about the dangers of conformity, my anti-Catholic stance on a woman's right to make decisions regarding her body, including whether or not to have an abortion, and -- much to Henry's horror -- my stance on feminism, stated to a car-ful of teenagers in my carpool from school (what can I say? I had a captive audience!), Henry is perfectly happy putting on his uniform every morning, sitting through a 7:50 am Rev of Jesus class and listening respectfully as athletes pray before games. I am certain that were I to drop him in east Los Angeles, he'd be equally as adaptive, a kid to whom others flock and who, at worst, is called perhaps a little too chatty, by his teachers. Henry looks exactly like my father who is one of the most good-looking and glamorous men on the planet, even now at age 77, and he somewhat takes after me as a voracious and fast reader. This year he is in Honors English and subject to, most recently, Homer's Odyssey, a book that nerdy old me was so excited for him to read (the wine dark sea! the wine dark sea!) but which he read in agony and finally finished tonight. He told me that he was tempted to burn it, he hated it so much, but I convinced him to stand there and hold it up in victory.

This will probably be the only dispatch from the School of Tradition for quite some time as it's generally conflict that breeds story, and we all rest easy with the Henrys of the world.

The Epilepsy Walk at the Rose Bowl and the Disappointing Fate of Ollie's Lemonade Stand

Oliver, his friend Mac and The Husband were up past midnight last night, preparing lemonade and chocolate chip cookies for today's End Epilepsy Walk at the Rose Bowl in Pasadena. This morning, they rose at 5:30 to pack up the car and drive over there to set it up:

Henry, Sophie and I joined them a few hours later:

Ollie's Lemonade Stand was in full swing when we got there, and some of my favorite people came to support us and Team Sophalofa:

Here's our team:

Here are some random shots:

Here's the Quarterback of UCLA's Bruins -- very cool guy who brought in a ton of money in honor of his sister who has epilepsy:

Here's Oliver with Henry, a seizure dog, courtesy of a canine therapy group that was founded by a high school classmate of mine in Atlanta, Georgia!

So, all was well -- until the unexpected happened. The Health Department showed up and Shut Ollie's Lemonade Stand DOWN for operating without a permit.

Holy crapola, right? And what the hey and WTF?

Oliver was devastated, to tell you the truth. He and his father had worked so hard, and he had hoped to make many hundreds of dollars, a significant portion of which he intended to donate to the Epilepsy Foundation. Yes, we told him how proud we were of him, how this was sort of a lesson in entrepreneurship, how frustrating these things are (it was difficult not to rant and rave against a bullshit government agency, but we didn't. I think at one point, The Husband who is generally quite the ranter and raver, particularly about America, said that the guy was just doing his job). It looked like the whole day was going to be ruined for him -- Oliver is not one to let things roll off his back, and I steeled myself for gloom and doom and sturm und drang. But do you know what that boy did after moaning and groaning a bit? He proceeded to help the Epilepsy Foundation give out the lemonade and chocolate chip cookies for free. Here he is being interviewed as a sibling of a person with epilepsy. I'm not sure where this footage will appear, but I'll keep you posted.

I was in tears and so proud of him.

So, all in all, the lemonade stand was a success in that Oliver learned about starting a business and dealing with the inevitable frustrations that come with entrepreneurship. They also made a good amount of money before the shut-down, and hundreds of people enjoyed the best lemonade and cookies in Los Angeles.


Thank you Craig and Carmen, Lisa, Bridgette, Bob, and Maccabee for coming out to support us. And thanks to all of you who donated so generously. We love you!

If you'd like to donate to Team Sophalofa, it's not too late. Here's the link to help us to END EPILEPSY.

What I did with 16 eggs, 3 cups of sugar and various other ingredients, today

Buttermilk Cake with 

Lemon Curd Filling and 

Vanilla Buttercream Frosting

When I wasn't doing that, I was doing this:

Saturday selfie with Sophie

and listening to this:

Boys playing video games and fighting

During the cake clean-up, I literally begged The Brothers to take their sister out on a bike ride. I had been incredibly neglectful of Sophie all day. After yelling from the Video Den, formerly their bedroom Mom! It's pitch black outside! and me yelling back to Just do it! You'll be fine in the dark! Stay out of the street!, they did it. They took Sophie outside on the Duet bike and rode crazily up and down the street with her for twenty minutes. I boxed the cake, finished cleaning up and lay on my back on my bed with my eyes closed. The thought passed through my head that something horrific would happen to all of them, out there in the pitch black dark, on the street in Los Angeles, and that I would be blamed for being a negligent mother, but that thought was only for a second because they were back, pounding on the door, pushing the bike on through, Sophie's cheeks and hands chilled, my guilt assuaged.

Another Dispatch from the School of Revolution: Squishy Dough Parts

Here's the Big O, downing a bowl of spicy chicken ramen. I picked him up yesterday afternoon from a small school that includes home-schoolers in its special Friday program. Do you know that boy went, not knowing a soul, and came out all smiles? The day's activities and learning included the viewing of the great Jacques Tati's M. Hulot's Holiday. Honestly, who knew I'd be talking about a French movie with my twelve year old son, and so enthusiastically, particularly after the heightened drama of the last couple of months. He's been a whole lot of smiles of late, partly due, I'm sure, to the de-schooling that we're doing, and partly due to the fact that he's a smiler naturally, and he's just remembering how to do it. I feel a bit manic when I start talking about these two books I'm reading -- Deschooling Gently and The Teenage Liberation Handbook -- I imagine droves of people, even some of my closest friends, think I've gone completely off my rocker. Which I have, actually, at least regarding cigars and John Boehner.

Anywho.

Here's a conversation that the Big O and I had in the car on our way home from his wonderful day. As background, I'll reveal that Oliver had to go to the bathroom, really, really badly but there was too much traffic to stop the car, so he told me that he needed to just keep talking to stay distracted.

Mom, how DOES a girl pee, anyway? Where does it come out of? he asked.

Oliver! You know that! There's a small opening at the end of the urethra, I replied.

Oh, yeah! I remember that from those pictures we looked at in science class. You know, of the human body? All almost-teenagers' voices end in a question, right?

Exactly, I said.

Yeah, there's a hole there that's between two pieces of dough, squished together. He looked out the window.

Reader, I nearly wrecked the car and then just said what I've said at least 67,459,021 times during the last twelve years:

OLIVERRRRRR!

The main message from The School of Revolution, of course, is that things are actually quite hunky-dory normal in these parts.

Orange, Tan, Boner-Man - A Rant Against the Machine

I'm proud of my little nasty, snarky epithet for Speaker of the House, John Boehner who yesterday actually uttered these words:

The United States of America has the best healthcare delivery system in the world.

This comment alone makes me want to start digging a grave -- not for The Tan Man --but for myself and the millions of other people in this godforsaken rich as shit country who have been struggling with the best healthcare delivery system in the world ever since Sophie was diagnosed with a devastating seizure disorder nearly nineteen years ago. As a member of an HMO at the time, I had to get approval before seeing a specialist, and then when I got approval, we were told that the wait to see the neurologist was four months. In New York City, home to two, if not three, of the world's "greatest epilepsy centers," I would have had to wait four f**king months for a neurologist to see my baby.

Do you know what happened?

A woman I grew up with in Atlanta, married to a New York City billionaire, took offense to that wait and called her husband's room mate from college who happened to be a pediatric neurologist who then called me and instructed me to go to the emergency room of New York Hospital where I was met by an official and ushered through triage and the emergency room. Less than four hours later, Sophie was diagnosed with infantile spasms, a type epilepsy that if not treated as soon as possible, can cause regression and all manner of horrible things. So, let me emphasize that our journey through "the best healthcare delivery system in the world" was initiated by a billionaire because it takes a billionaire to make things happen. Despite that white-gloved early diagnosis, the carpet that unfolded in front of us for the next two decades was so beset with aggravation, wheeling and dealing and stupidity that I'm a changed person because of it, and not in a good way. Multiply our experience with the best healthcare delivery system in the world a thousand-fold plus -- because this isn't just about Sophie or our family. It's still going on and only barely improved by some of the new laws of the Affordable Care Act which, it seems, might just implode any moment.

Long live the plutocracy and f**k The Tan Man and all the people who believe him.

I feel better having said it and thank the universe for blogging. You should try it if you want to jump from a roof or hang yourself, because if you're like me, it'll save your life. You'll just give it all up, take up smoking cigars and let it all just go to hell.

How We Do It: Part XXXVII of a Series: Fragment

I took Sophie to the osteopath this morning, and she placed her gentle hands on Sophie and worked to move and heal her. In her silent room with a view of the gray Pacific, doves cooing on the sill, the doctor spoke softly and I lay my head on Sophie's stomach and closed my eyes and breathed in calming myself, breathing out smile. We spoke of Dr. Viola Frymann, the great and now very old osteopath who saw Sophie regularly when she was a baby and whose influence on me is immeasurable. I heard the gurgling of Sophie's stomach beneath my head, felt the infinitesimal jerks of her body, let tears slide out of my eyes, the memory of Sophie as a baby, the hopes for her, the compromises and acceptance, the despair and love and acceptance again, even of death. When I drove home, the cars ahead and around me glinting in a too-hot Los Angeles morning, I thought of the angry voices of the internet from that morning, those who call other mothers irresponsible for what they do and don't do for their children, the endless and interminable vaccination argument, black and white and how clicking them off, shutting those voices, xing them out, angry and stupid, doesn't still or instill anything. Sit with me, here, I think, lay your head, here, next to mine. Listen. Lower your voice. Abide.



Of course! The path to heaven doesn't lie down in flat miles. It's in the imagination with which you perceive this world, --


The Swan

Across the wide waters
     something comes
          floating—a slim
             and delicate

ship, filled
     with white flowers—
          and it moves
             on its miraculous muscles

as though time didn't exist,
     as though bringing such gifts
          to the dry shore
             was a happiness

almost beyond bearing.
     And now it turns its dark eyes,
          it rearranges
             the clouds of its wings,

it trails
     an elaborate webbed foot,
          the color of charcoal.
             Soon it will be here.

Oh, what shall I do
     when that poppy-colored beak
          rests in my hand?
             Said Mrs. Blake of the poet:

I miss my husband's company—
     he is so often
          in paradise.
             Of course! the path to heaven

doesn't lie down in flat miles.
     It's in the imagination
          with which you perceive
             this world,

and the gestures
     with which you honor it.
          Oh, what will I do, what will I say, when those
             white wings
           touch the shore?

Mary Oliver

Do not be overwhelmed by the enormity of the world's grief. Do justly, now. Love mercy, now. Walk humbly, now. You are not obligated to complete the work, but neither are you free to abandon it.

The Talmud 

I'm not sure how to do that, especially given a cursory reading of the news this morning. The man dying in the Tacloban hospital, the spy who was found naked in a duffel bag in the bathtub, the millions uninsured, my own daughter's haunting banged up face. Living with questions, neither free nor obligated.

The Face of Epilepsy

That's the face of epilepsy. Sophie had a seizure this afternoon, while walking with her aide. Her face hit the pavement despite the best attempt to keep it from doing so. Her nose is swollen, as you can see, and one side is caked with dried blood. This is the kind of thing that makes me despair, to tell you the truth, to feel the long tail trailing behind me. It's made of bumps and bruises, split open heads and helplessness. It's attached to me but not about me. It's about my child -- many children, actually, millions of them. I want to cry, give up, give in, but instead I'll lay Sophie gently on her back and wipe her nose with a warm cloth. I'll make her an appointment with the osteopath who will tend to her with healing hands. Her brothers will murmur poor Sophie, and that won't be pity or condescension but the truth.

Cake, Lemonade Stands, Homeschooling and The Walk to End Epilepsy

That's going on: cake baking. Today's order is for a Red Velvet Cake with Vanilla Buttercream Frosting. I have to decorate it, too -- a wacky Coupon Diva logo. Later, I'm making an Hallelujah cake for a friend's birthday party. The Big O is working on his lemonade stand that he'll be manning at this Sunday's End Epilepsy walk and 5K at the Rose Bowl in Pasadena. He and The Husband are making it into quite a project -- a homeschool project, actually -- with real food and labor costing, profit margins, etc. Oliver has "hired" two friends to help him out, and the Epilepsy Foundation of Greater Los Angeles is providing a booth, table, chairs, tablecloth and, of course, thousands of patrons. I believe there will be lemonade and cookies (home-made of course) for sale for hundreds and when they're out, they're out. A significant portion of the proceeds will benefit the work to End Epilepsy.

In case you aren't around to have some of the best lemonade in town, you can still contribute to the walk by going to our Team Sophalofa page and making a donation. Any amount is welcome -- our local affiliate -- the Epilepsy Foundation of Greater Los Angeles -- is a terrific one whose director and other employees work incredibly hard in responding to those of us in the community. They even, most recently, have attended informational conferences regarding this whole medical marijuana thing and are organizing efforts to find out more. Given how top heavy many non-profits are, and how so much money goes to schmoozing and administrative costs, it's so refreshing and encouraging that the EFGLA is so responsive to its members. The walk is at the beautiful Rose Bowl in Pasadena, something that we look forward to each year.

Join the Walk to End Epilepsy, Drink Lemonade from Ollie's Lemonade Stand and Eat Cookies!

Dispatches from The Schools of Humming, Tradition and Revolution***

Dispatch One - Revolution

Since we decided to pull Oliver from his public charter school and explore options, I've been reading a book called Deschooling Gently by Tammy Takahashi that has been enormously helpful in these early days. I realize that for the past year and a half, Oliver's experience at school has been increasingly stressful and that he broke down completely in the last month and a half of this school year when it appeared that things were not going to be an improvement over last year. I won't go into the reasons why here, but suffice it to say that it was a sort of perfect storm with no one person or institution to blame, but rather a confluence of factors (adolescence, dyslexia, unique personality) and a direction that our school is taking that I believe to be unfortunate. I looked at Sophie a few weeks ago, looked at Oliver and looked at Henry. If I'd been naked in a tub, I would have sat up and shouted, joyfully, Eureka! This is way too hard and life is too short and Oliver is too precious to go on like this! Literally. That's literally what I thought. So I put a stop to it.

Here are a couple of quotes from the book:

Deschooling is a process of getting used to learning as a family without the external control of a school system. Some call it a decompression time, or a vacation. Generally, it involves doing less schoolwork and more life work, less judging and more exploring, less have-tos and more want-tos. Deschooling is moving toward a life where everyone is happy and learning.

Deschooling is learning how to live without being in school, to fend for ourselves, and to provide our children with an appropriate educational environment. 

So, that's what Oliver and I are doing right now -- we're de-schooling. In the mornings, we sit down and listen to the Writer's Almanac. This morning we listened to some fascinating information about the history of Voyager I that led us to search for Carl Sagan's beautiful reading titled "The Pale Blue Dot." We watched a video on that, explored another website about Saturn and talked about what it means to be alive in the universe. We wrote in a journal online and set a goal for the rest of the day. The other day, Oliver particularly liked a poem by Anne Sexton that we heard on the Writer's Almanac, so we talked about metaphor and hidden meanings. That discussion went into the online journal, too. Oliver dictates and I type (remember how much I love to type and how good I am at it?).

Yes, I have plans to explore other options -- even other schools that cater to the dyslexic child. I've done and continue to do lots of research on homeschooling, though, and I'm already making connections. There's math to think of and science, of course -- there's curriculum and field trips and get-togethers. Every now and then I think I've gone completely insane, but then I pick up the book and remind myself that we're "deschooling gently," that this didn't happen in a vacuum and that Oliver is happy and silly and light for the first time in well over a year. I'll repeat that:

Oliver is happy and silly and light for the first time in well over a year.


***The dispatches from the Schools of Humming and Tradition will follow in the next few days.

I dropped Henry off at school this morning for his first day of pre-baseball conditioning. We left at 5:45 in the still darkness, and when I drove back around 6:15, I saw the most spectacular sunrise I've seen in my life. I awkwardly tried to take a couple of photos, but the best came out like this:

and maybe this:

Honestly, that yellow blurry band at the bottom was THE SUNLIGHT, and it was layered with ice-cream colors up to blue. I blinked a few times and wondered if this was what it felt like to be hallucinating.

The universe is abundant.