Mini Cannabis Update and Pigs Flying

Sophie has been struggling this week, right through the full moon and beyond. We've added THCa to her medical marijuana regime and have refrained from another Onfi wean. That sentence sounds almost like a foreign language, doesn't it? Last night I spoke with our fantastic Dr. Goldstein who had heard from a few other patients that the newest batch of Charlotte's Web has a lower ratio of CBD to THC, and she suggested the drop might be part of the reason why Sophie is having increased seizures. So far, the best reaction to Charlotte's Web, for Sophie, has been the 28:1 - 32:1 oil, and the one she's using right now is 21:1. We're waiting to see whether we can get a higher ratio, and I have a feeling that that will do the trick.

It's more interesting to me than anything else -- this tinkering and observation of this fantastic new medicine for Sophie. I have a good amount of faith that we'll figure it out, and Sophie will be on her way again to seizure freedom.

I know this blog has been weighty of late -- the Blog of Misery, one of my friends told me -- but I actually feel pretty positive about Charlotte's Web and the stellar cast of characters who are making it happen. I saw that Florida's Bozo of a governor actually signed a medical marijuana bill into law today.

Look out, folks. Pigs are flying!

Rolling around with Tolstoy

I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious of truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues , which they have proudly taught to others and which they have woven, thread by thread, into the fabric of their lives.

Tolstoy

I love that quote -- have been rolling it round and round in my mouth (I wish I spoke Russian!) as I go about my day. It pertains to the growing debacle in Iraq, and it pertains to the federal re-scheduling of medical marijuana and it pertains to our recent discussion of special education and private/public schools. It pertains to my earlier lament about Sophie's summer school location and this article I read today about the biggest house in Los Angeles being built, a whopping 85,000 square feet, valued at $150 million dollars.

Roll it around, baby, roll it around.

And P.S. One of my seesters reminded me that it also pertains to the NRA and 2nd Amendmenters and their inane arguments against gun control.

How We Do It: Part XLV

There's a lot of crying going on behind the green sunglasses, and this morning there was crying without them. The morning was gray in the way of June gloom, and I had just dropped Sophie off at her summer school location, a middle school in the heart of Hollywood that I had visited many years ago when I was looking for a middle school for her. It's an ugly school -- maybe one of the ugliest schools you'll see in this part of Los Angeles, and I remember crying when I left it the first time. I had dragged Sophie out of bed this morning, fed and dressed her, something we are generally loathe to do before she's ready. On Saturday I got a notice from the school that if she didn't "show up," she would not be eligible for the four weeks of the summer program. It was a threatening letter in the way letters from the Los Angeles Unified School District are threatening. They are bland. They are mediocre. This is the sort of thing that frightens me -- the bland, the mediocre. I need something to do with Sophie for a few hours every day. I can't pay for everything. There are groups of mostly boys and young men in clumps at the entrance. I know some of them from Sophie's regular school. One young man screams wildly, flaps his arms and runs around in circles. When I pushed Sophie's chair into the tiny elevator to take her onto the second floor of the ugly building, I couldn't help but wonder what would happen in the event of an earthquake. I couldn't help but wonder why they would put disabled children into classrooms on the second floor. I remembered the room I was shown so many years ago at this same school, a trailer across a giant concrete courtyard, not a speck of green in sight. Condensation from the uniform cleaning factory across the street fell on my arm, and when I worriedly asked the aide what it was from, she told me that she thought it was bleach. When it gets too heavy, we bring the kids inside.That was a long time ago, but I couldn't help but remember it during the ride up the elevator. The doors opened, and I pushed Sophie into a bleak room whose windows were covered with landscape posters. The fluorescent lights blinked, and Mr. G introduced himself. He asked me what Sophie's problems were, and I told him. When Sophie's aide M walked into the room, I felt a rush of relief, but I still felt terrible leaving Sophie in such a place. Remember. I need something to do with Sophie for a few hours every day. I can't pay for everything. I can't give her a nicer life. There is nothing for these kids to do. They are, evidently, not worth it. The legion of disadvantaged kids that go to these schools, these ugly, impoverished schools, are not worth it. I don't know how they do it. I know how I do it. I drop my daughter off. I leave her with a beloved aide and strange Mr. G on the second floor of a building in a room that has no sunlight. I walk down the stairs and out the door and get into my car and drive off. I cry, openly, without sunglasses and don't care at the stoplights. All the way home. When I get there, I go into Sophie's purple room and make her bed. The sun is out now. I'll do my thing. I'll wait for her to get home at 1:00 and try to make it up to her.

The Funk That Doesn't End All Funks

Daydream
Andrew Wyeth

I had to stop myself from looking through the photos of Sophie's birth when I looked at one of myself and noted how "awful" I looked. I was rummaging through for a picture to publish with this post. Obviously, I didn't find one.

I teared up today, right before I went on a walk with Sophie. Henry asked me what was wrong, and I told him that I felt burdened. The words came out before I could stop them, and Henry said by Sophie? And I said, yes, and he said, we all are, and I told him that was true but I wanted to hold it for him and his brother, too. The burden, that is. Then I went on the walk with Sophie and cried some more, in the sunlight, behind my green glasses. I'll always have to pay someone to help me with the burden, I thought. That's an awful thought, for those of you who don't know what it's like, but it's an awful thought even for those who do.

Why do we loathe our graveyard thoughts? Why not let them rise to the surface, simmer there and evaporate without mockery? Why at the very least not treat them lovingly? I should say I, not we, as I can't speak for you.

I'm re-reading Updike's Couples. It really is scandalous, but I really do like it.

Here's a sentence that would knock my socks off if I wore them:

Harold believed that beauty was what happened between people, was in a sense the trace of what had happened, so he in truth found her, though minutely creased and puckered and sagging, more beautiful than the unused girl whose ruins she thought of herself as inhabiting.

Happy Father's Day

I love you, Dad.

June 14, 1995

Sophie was diagnosed with infantile spasms on this day, nineteen years ago.

I'm not much a one for "anniversaries" -- all that "never forget" blather.

We really don't ever forget, do we?

It's been a long, freaking ride.

Darkest Hour Before Dawn Thoughts

The g-d dog woke me up again this morning, her nails clicking on the floor back and forth up and down the hallway, needing to go out. She needed to go out to eat grass and retch which was after she had thrown up on the floor at the foot of my bed. I let her out into the honeymoon-lit back yard and then I let her in, closed the door of my bedroom and pushed the wicker hamper in front of it so that she couldn't push the door open and back in. Perhaps as a punishment for my lack of compassion, for my un-dog-loverness, I was unable to go back to sleep and lay on my back for what seemed like hours having the darkest hour before dawn thoughts of loneliness and despair, and then the mediocre thoughts of the awake too early in the morning women. I wonder if Henry will have sex too early? My god, they never gave me a copy of Sophie's IEP before school let out! Should I email that director of the SPED office right now to ask him what the hell? What the hell, anyway? I read a Lydia Davis short story. It was 4 am and then 5am. I served my time, fell back asleep.

Orange and Pink: Stirring Things Up

I wish those of you who aren't could be a part of the discussion on my Facebook page about an article I posted today called Why Do President Obama's children go to a segregated school? Here's the link, and I'd love to hear what you think. I'll start you off with the same thing that I said when I posted it. As soon as I get their permission, I might post some of the other comments because they're incredibly enlightening -- on both sides of the debate.

Elizabeth Aquino

21 hrs · 

Please read and think about it. And if you have children in a private school, let me know if your children have any classmates with disabilities.

Why do President Obama’s children go to a segregated school?

Not one of Sidwell Friends School’s more than 1,100 students has a physical disability.                                       

THEHILL|BY JENNIFER LASZLO MIZRAHI

Inclusion, Disability, Iraq, and THCa

There's so much to ponder these days, don't you think? There's that Tumbler going around written by a young woman who cares for her disabled 31 year old sister because her parents died. They live in California and are facing the alarming lack of services and obstacles to getting those services that those of us who already live here are aware of to a nauseating degree. I and some other folks are "on it," though. Stay tuned. Then there's an interesting discussion on my own Facebook page, centered around this article, about the segregation of children with physical disabilities from the elite private schools in Washington, D.C. Some of the commenting got a little testy, including my own, but it's discouraging to think that in 2014, we're still having to not just fight for equal access and inclusion for all children but continue to bring awareness to these issues -- even in the biggest most progressive states in the country.

Sigh.

On another note, our more than a decade long war that resulted in hundreds of thousands of lives lost, thousands of those Americans, trillions of dollars spent and country bankrupted both financially and morally, seems to be imploding again.  That foreign policy "initiative" might have been the worst one our country made in history. And if I have to see or hear that crazy John McCain say anything else about it, I might scream. Honestly, the man should just retire to his hometown in Arizona and play golf. What do you think? Should we just continue to bury our heads in the proverbial sand or protest in some concrete way?

What do I know, though, about anything really? It's a full moon tonight -- the Honey Moon -- and while Sophie's seizures have picked up a bit, maybe because of it, I'm looking forward to seeing it from Calabasas where I'll be driving Henry later for his first club lacrosse practice. In the meantime, for the record, we've added THCa to Sophie's cannabis regime. I'll keep you posted.

Donuts, Chinese Food, Sundaes, the Full Moon, Cannabis and THCa

That's my new favorite sign, although I haven't tried the donuts or the Chinese food, yet.

When Oliver got home from camp today, all talk of nutrition was once again thrown out the window when he offered to make sundaes:

It's a full moon evidently tonight which probably explains Sophie's weird seizures (small but still weird) and clammy hands and feet. In any case, you heard it here first today that we're going to use THCa as an add-on to the CBD. Word is that a few of the kiddos on CBD became completely seizure-free with THCa added on, so we're giving it a whirl. I don't feel like typing it all out here, but I will at some other point. In the meantime, you can watch this video, narrated by Dr. Bonnie Goldstein, Sophie's amazing doctor.

My Addled Mother Mind

Things aren't always what they seem to be. This morning I launched into what can only be called, in retrospect, a harangue, about food choices. I was driving my son Oliver to Los Angeles River Camp and sipping coffee and -- let's face it -- pretending that I was actually in control of the situation and that my words would somehow penetrate his busily growing yet not nearly fully formed frontal cortex, and he would realize that eating nothing for breakfast and then packing a sack lunch of a pile of jelly with crackers, an orange and a plum with no protein anywhere in sight was not a good eating plan! And I've told you that a million times! And I'm your mother, and that's what I'm supposed to do! And I'm tired of your grumpiness in the morning, just sick of it! And there's plenty of food in the fridge -- there's turkey and cheese and bread and you can make yourself a sandwich! And you'd better not ask for a Slurpee when I pick you up! And so on and so forth. There was, of course, a steely silence, his still-baby-face profile turned resolutely toward the window. A few minutes passed, during which I contemplated the universe and played with that parenting adage of what will be important tomorrow? next week? next month? in five years? and decided to offer an apology for my out-of-control harangue. I'm sorry I over-reacted to what you packed for lunch this morning [a pile of jam, remember, and some crackers], Oliver. I shouldn't have been yelling at you about that. The steely, look out of the side window prevailed. Silence. Do you accept my apology? I offered, again.

No, he said.

I was going to write about what came next, how I turned into a Starbucks parking lot, gave him some money to purchase one of those plastic-covered boxes of food, how he jumped out the car, ran inside and brought it out. I was going to tell you that he was smiling and said Thanks, Mom. You are the best mother in the universe, and I totally understand how difficult I am, what a pain in your ass, but I know that you love me and that's all that matters now, tomorrow, next week, next month and in five years. 

Things really aren't always what they seem to be, though.

That chicken place? We live in a part of Los Angeles currently near over-run by hipsters. I found the wording of the sign awesome and chewed on the suggestion that chicken might be ordered live or raw for to-go eating. I know, not really. When I drove back by the place after dropping Oliver off, some big truck had just left hundreds of cages, big, fat white and yellow chickens spilling out of the bars, a repulsive, sorry sight for a city girl like me. I barely prefer my chicken pale and yellowish on a tray in the deli section of the grocery store, much less waiting for me to pick out and slaughter. How did I get to be in charge of these three children? From where comes my authority?

These are the thoughts that crowd my addled mother-mind.

On Not Giving a Flying Foo Foo

Let's get back to our regular business and forget, for a moment, the shameless self-promoting (although I'll have you know that my book is currently ranked #23 on the Amazon e-book sub-category of women memoirs, right ahead of Diane Keaton's). Thank you!

But back to "regular business." I'm just now coming down from a whirlwind of conferences and galas and public speaking engagements -- an exhilarating and overwhelming ride. I've spoken in public before -- many times, actually, when I was working for several collaboratives that addressed systemic healthcare improvement initiatives. I've also served on a few boards of a few non-profit foundations and even helped to found one back in the dark days of the last millennium. Going to galas and benefits that raise money for epilepsy causes is a mixed bag -- I am at once grateful that so many people support the cause, repulsed by the schmooze factor (especially on Wall Street and in Hollywood), and depressed with the acknowledgement that these are my people and this is my life. Frankly I'd rather be conjugating French verbs, to tell you the truth, or at the very least baking a cake and reading some poetry.

That being said, this past weekend in San Francisco, when I participated on the medical marijuana panel at the Epilepsy Pipeline Conference, I had a sort of epiphany or suddenly realized just how much things had changed. Generally, I'm a fiery and opinionated sort of woman, quick to mouth off and express my opinions, often sharp-tongued, and given the topic, frustrated and angry about the access to and quality of healthcare for children with epilepsy. I know there were some people at that conference who found me unbearable, and I winced, a bit, viewing the taped session, noticing how the female doctor and female nurse just might have motioned to the moderator to cut me off and allow them to speak. Contrary to what you might think, I'm not this entirely confident person all the time.

I confess, though, to realizing at the conference how my former motivations might just possibly -- OK, definitely -- have been about ego, about vindication, about hoping for and forever being denied a Power That Be who would step up and say, You are right! We are so wrong! We fucked up your daughter's life because we don't know anything and there's a vast and horrific conspiracy of Big Pharma and Western Medicine that we've been a part of, contrary to our Hippocratic Oath. You win!

My epiphany, actually, was this: I don't give a flying foo foo what They think. 

I realize that Sophie's astounding reaction to Charlotte's Web has nearly everything to do with this, that I'm in a new and unusual (for us) position of not needing their help. It feels outrageous -- like I actually am on a tightrope suspended over the world, which -- contrary to before -- looks sparkly as opposed to dark. I feel graceful even, for this moment.

Hope for a Sea Change

After a hectic day of weird links and other internetsamania, my Shebooks e-book is up and ready to roll on all platforms. I encourage you to download it from the Shebooks website as this is an amazing new platform that aims to close the gap between male and female publication and writing. I subscribed and have downloaded and read many wonderful memoirs and short fiction selections from the website. You can also help support the platform by donating to their Equal Writes Kickstarter campaign.

Here's the link to my author page where you can also buy and download the memoir.

Thank you so much for your support -- it's hard to really take it all in, but know that I am grateful!

"Hope for a Sea Change" is out and available for purchase! UPDATE!

A new version of the book with an added, short chapter about medical marijuana, is available and will be downloaded wirelessly if you've already purchased the e-book. Thank you so much for all of your support today and always!

I woke up bleary this morning after last night's festivities to a message from Angella at 37Paddington that my Shebook e-book was available for purchase on Amazon right this very second!

Good lord, ya'll. This is very exciting for me. I hope you'll download it for $2.99 and then spread the word to your friends and accomplices in life.

Forgive the shameless self-promotion that you might witness over the next few weeks. I promise that if I become a gazillionaire, I'll buy us all a private island where we can lie around all day talking about books and poetry, sip bourbon and relax.

Here is the link:

Amazon
Shebooks.net