Yet

Henry turned twenty years old yesterday. He, like Oliver, doesn't have much to do with Sophie these days, yet the love is there. It's always been there. Sophie loves Henry so much that I can actually feel it.

I feel like writing off of this today, a day where everything is fraught with symbol.

I read this just now on the Paris Review website, thrilled that the French came easily to me:

Je voudrais vivre pour écrire. Non penser à autre chose qu’à écrire. Je ne prétend [sic] pas l’amour ni l’argent. Je ne veux pas penser, ni construire décemment ma vie. Je veux de la paix: lire, étudier, gagner un peu d’argent pour m’independiser [sic] de ma famille, et écrire.

They were written in 1959, in the diary of 23-year old Argentinean poet Alejandra Pizarnik. 

(I would like to live in order to write. Not to think of anything else other than to write. I am not after love nor money. I don’t want to think nor decently build my life. I want peace: to read, to study, to earn some money so that I become independent from my family, and to write.)

With news of a con-woman in what passes for the literary world these days, I'm staving off cynicism that the whole thing is a racket.  I had an encounter with her some years ago on Facebook. She made derisive comments about those who don't vaccinate their children -- something about morality. I objected and as I so often do after exchanges like that, receded. Wary.

Sophie had two seizures this morning before 6:00 am. Brief, yet. Yet as an operative word because -- you know -- a seizure is a seizure. There's a full moon coming, yet. It's all where you place a word. Yet, we are not supposed to attribute seizures to full moons.

Seizures and the Full Moon

I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mind™, in its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:

But her best comment -- the one that released me from my angst and made me laugh long and hard was this:

We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.





I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.

Hedgebrook, Day Eight

Full moon over Deer Lagoon, Whidbey Island

the devourers of books, who exhaust themselves 
only by reading, should desist as soon as they find 
their comprehension more than commonly slow, 
their sight moaty and dimmish, or their eyes hot and watery.

Samuel Tissot, from his Essay on Diseases Incident to 
Literary and Sedentary Persons (1769)


Don't think I haven't felt chagrin, even guilt. I woke this morning and peered over the railing next to my bed, a loft that you reach by ladder. The sun slanted through the small, paned window over the kitchen sink and fell on the floor in a rainbow. Each part of the Hedgebrook cottage is perfect, perfect and sufficient to each moment. My mind might wander to the future, the end of my stay, finger the sore of re-entry, but the solitude here, the birds, the wildflowers gathered from the garden and placed in a jar on the windowsill, one plate, one bowl, one fork, one spoon, one cup to hold coffee conspire to keep me here, now.

This Night Only

I opened up this file last night while I sat on Sophie's purple beanbag chair and the sun went down and the super moon went up.

Rexroth's voice was an incantation, and the Satie tinkled behind.

Let's go to Malibu.

Listen to it here.

Here:

An Easy Song

"It’s rained every day since you
Went away. I’ve been lonely.
Lonely, empty, tenderness —
Longing to kiss the corners
Of your mouth as you smile
Your special, inward, sensual,
And ironic smile I love
Because I know it means you
Are content — content in French —
A special, inward, sensual,
And ironic state of bliss.
Tu es contente, ma chèrie?
I am, even if lonely,
Because I can call to mind
Your body in a warm room,
In the rainy winter night,
A rose on the hearth of winter,
A rose cloud standing naked,
In the perfume of your flesh.
Moi aussi, je suis content."

Kenneth Rexroth

And here:

Air and Angels:This Night Only

Moonlight   now    on Malibu

The winter night    the few stars

Far away   millions    of miles

The sea   going on    and on

Forever     around   the earth

Far    and     far     as your lips    are near

Filled    with the same light     as your eyes

Darling     darling     darling

The future     is long gone by

And the past     will never happen

We have     only this

Our one forever

So small    so infinite

So brief    so vast

Immortal     as our hands that touch

Deathless     as the firelit wine we drink

Almighty      as this single kiss

That has no beginning

That will never

Never

End

Kenneth Rexroth

Dispatch from the Medical Marijuana Revolution

So, here's the thing. Last week was not a good week. There was a pretty decent earthquake, a full moon, a vague virus, the bottom of the bottle of the second batch of Charlotte's Web and some seizure activity after several weeks with virtually none. The week before last, there was also an Onfi wean that The Husband forgot to tell me about. AHA! Withdrawal was probably more the reason for the increased seizure activity than all those other things combined. I think. There's always a lot of thinking going on in these parts --shallow thinking (why, why wasn't it me that had a Javier Bardem sighting in the Polo Lounge in Beverly Hills the other day***), mid-level thinking (why the hell can I not make it through novels longer than 400 pages anymore?) to highly complex thinking (perhaps I walk around and drive around in a weird state of numbness because I actually CAN after nineteen years of dealing with the adrenaline rush of constant crisis?)

Anyhoo.

I highly recommend that any of you with children with refractory epilepsy or any of you with seizures or other autoimmune diseases at all give this medical marijuana thing a try if at all possible, because the thing is: even when Sophie does seize, she recovers quickly, she's coming off of one of the most vicious anti-epileptic benzos, she's more alert overall and it really, truly looks like this is the thing. I know that hundreds of you are struggling in your states to get easier access or access at all. I know that many of you have neurologists who are perhaps more like dinosaurs than healers. I say forget them and pursue what you think will help your kid. I'm not going to even qualify that and say something bullshitty like I am not a physician and in no way recommend this treatment without a doctor's referral. Think back. Didn't I tell you not to try that fifteenth drug if it was in combination with the thirteenth and fourteenth?

This concludes today's dispatch from the Medical Marijuana Revolution.








***Probably because I have never been to the Polo Lounge. A friend of mine posted it on Facebook and I died a small death -- you know, la petite morte. There's some medium-thinking for you. Look it up if you don't know what I'm talking about.

Weekend wrap-up in these parts (not pants)

That's Sophie's little foot right there in the corner. She's had quite a few seizures the last couple of days, probably the remnant of the moon's pull and tides. At least that's what we're saying in these parts.

Oliver had a lemonade stand and made quite a bit of money, a portion of which he's donating to the non-profit foundation that is helping children get access to medical marijuana.

Henry just walked by and did that trick where you make a horrible noise by holding your hand in your armpit and waving your arm up and down. I said Why would you think I would think that's funny? I know it's trite, but boys. Yeah, boys.

I've done laundry, supervised the lemonade stand, read a bit of Armistead Maupin's Tales of the City, talked on the phone with friends, argued a bit about Confederate flags and the people that fly them, restrained myself from eating sugar, moved papers on my desk to the kitchen and then back, walked to CVS with Sophie to pick up her medications and felt grateful that she receives SSI funding so I can actually pay the deductibles without careering off into the financial anxiety abyss I find myself in these days.

Anyhoo.

What happened in your parts? (not pants)

Full Moons and Fires and Seizures, Oh My! Oh, and Earthquakes!

Downtown Los Angeles, 1/16/14
photo via thewire.sheknows.com

No sooner had the ink dried on the two-week proclamation of Sophie being seizure-free for two entire weeks, then I received a text from her teacher at school that one occurred. That was Wednesday afternoon, and yesterday was a bust -- many seizures all day long, the subsequent clamminess and then the combined out-of-it-ness and agitation.

Small sigh.

The sigh is small because Sophie went two weeks without a seizure! I'm going to attribute the breakthroughs to the full moon, the fires burning just outside Los Angeles (the picture above, although not mine, is what most of us saw all day yesterday and then,late in the afternoon, smelled), the incredibly dry air, Santa Ana winds, small earthquakes (so far) and Oliver's Cold That Sophie Might Be Catching.

Medium sigh.

In the meantime, my record of meeting bloggers in person and adoring them stands as perfect. Christy Shake of Calvin's Story was in town and stayed with us last night. She is as lovely in person as she is a beautiful writer online, and I felt as if we were old friends. We talked and talked, ate a delicious dinner at a Korean small plate place in Beverly Hills -- tiny Brussels sprouts, roasted with tiny dried prunes, zucchini and peppers, a seafood pancake with salty dipping sauce, a salad of avocado, tiny figs, crispy rice and pomegranate dressing, and whole grain pot stickers with chicken -- and then talked some more back at our house before going to sleep. I am so grateful for these online relationships that morph into real-life ones.

Do you need a sweet laugh?  Read John Hodgman's New Yorker essay"Downton Abbey" With Cats  for a grand one.

Henry, Pedicures, Medical Marijuana Update Number 31,276,459 and the Full Moon

That's my beautiful boy, getting ready to jump down and pick up the screen that fell out of the window. He came home early from school today, and I can't even begin to tell you how E A S Y it is to hang out with him.

I did some hard-core cleaning today -- mainly in the boys' bedroom. They have an incredible amount of stuff -- let's be honest and call it shit -- piled in every nook and corner, so I got a big box and literally swept it off the shelves and into the box. I'm going to tell them to go through the box and only remove the things that they really, really value. Something tells me that most of it will appear, again, on the shelves or in the drawers or under the bed, but at least, now for one day, the room is pristine.

I also walked around the corner and got a pedicure. I splurged and did the hot stone treatment, and while my legs and feet were being massaged with hot black rocks, a woman called me and we talked for the rest of the time about medical marijuana, about CBD butter and tinctures and how it's helping her son and how everything, everything is moving toward it. We're going to meet next week, and she's going to let me try what she has been using for her eight year old son quite successfully.

The universe is abundant.

The Pediatric Cannabis Therapy of California Facebook group has a whole thread of comments about the upcoming full moon, Santa Ana winds and increased seizures in our kids.

The universe is strange.

I might be insane, but as I told a friend, I'm calmly insane.

The universe is constantly trickling through my fingers, and I can't hold onto it which is probably just right.