Wednesday, April 29, 2009

Why I Do It







"Up To The Mountain"


I went up to the mountain
Because you asked me to
Up over the clouds
To where the sky was blue
I could see all around me
Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I've never been nothing but tired
And I'll be walking
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you ask me to

Some days I look down
Afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice, oh
Oh, come and then go, come and then go
Telling me softly
You love me so

The peaceful valley
Just over the mountain
The peaceful valley
Few come to know
I may never get there
Ever in this lifetime
But sooner or later
It's there I will go
Sooner or later
It's there I will go

Poetry and Torture


For this Love is enraged with me,
Yet kills not ; if I must example be
To future rebels, if th' unborn
Must learn by my being cut up and torn,
Kill, and dissect me, Love ; for this
Torture against thine own end is ;
Rack'd carcasses make ill anatomies.


--from "Love's Exchange" by John Donne

I've held out commenting on the whirlwind of talk about torture -- that ugly thing that happened, is happening, has happened. After all, this is a blog about special needs parenting and poetry and funny stuff and chaos. Not politics, not torture. Then I read someone's post about the issue on a blog that I usually admire. It wasn't her post that astonished me (she's obviously conservative and speaks poorly of Obama) but the comments following. I felt so incensed by them that I commented back, shot off my big mouth and had a go at it. And I didn't feel better.

The truth is that I can't believe we're even arguing about whether or not torture is right. Whether there are circumstances that demand it. Or that somehow it's not torture if we're padding cell walls and giving people neck braces for when we toss them against those walls. I mean, YIKES! I'm the QUEEN of the ABSURD, and I feel like this is beyond even my ken. I feel like I live in an alternate moral universe from those who come up with a million reasons why it's "right." I'm not sure that I want to place myself in an alternate moral universe and I know that we're all capable of inflicting great evil on one another. In other words, I don't generally believe that I'm better than another.

But here are my thoughts in a sentence: Torture appears to be the awakening of one of the most primitive and least evolved impulses of human beings, and not admitting that is to enter into one of the lowest levels of Hell, in the way that Dante might describe them.

Here's another quote by the great John Donne from one of his sermons (and who wouldn't want someone like Donne preaching at them?):

Transgressors that put God’s organ out of tune, that discompose and tear the body of man with violence, are those inhuman persecutors who with racks and tortures and prisons and fires and exquisite inquisitions throw down the bodies of the true God’s servants to the idolatrous worship of their imaginary gods, that torture men into Hell and carry them through the inquisition into damnation.

And for lack of better words, go read THIS by the estimable Garrison Keillor. And, of course, you lurkers out there, tell me what you think.

Corner View Wednesday

Jane from Spain Daily is the "leader" of this tour around corners of the world. This week's theme is Modes of Transportation. After clicking on all the incredibly beautiful websites that are a part of this project and feeling increasingly jealous that I don't live in Spain or Italy or France or Japan or even the Middle East, it's difficult to even write about the subject.

I live in Los Angeles, home of the car and all the horrible stuff that goes with it. People are INTO their cars, here, despite high gas prices. They live in their cars, talk in their cars, and work in their cars. Not a day goes by that I don't see some outlandishly expensive vehicle -- a Maserati, a Lamborghini, a Ferrari. My kids play a silly game called Audi where they count how many Audis we pass.

There are car washes on just about every corner and hordes of unskilled men who make a living washing these overpriced, conspicuous modes of transportation.

As you can see, I actually don't give a damn about cars, the primary mode of transportation where I live. But this morning I'm struck by how I'd LIKE to travel.


Here are some beautiful places to visit:


jane, ian, bonnie, esti, sophie, modsquad,caitlin, joyce, ani, couturecoucou, kim, a day that is dessert, natsumi, epe, kaylovesvintage, trinsch, c.t., jeannette, outi, schanett, ritva, dongdong, francesca, state of bliss, jennifer, dana, denise, cabrizette, bohemia girl, ruth, dianna, isabelle, amber, a girl in the yellow shoes, mister e, janis, kari, jgy, jenna, skymring, elizabeth, audrey, allison, lise, cate, mon, victoria, crescent moon, erin, otli, amy, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, samanth

Tuesday, April 28, 2009

Healing and Curing


Here are two quotes that I find especially significant. Let me know what you think.

Healing does not mean curing, although the two words are often used interchangeably, While it may not be possible for us to cure ourselves or to find someone who can, it is always possible for us to heal ourselves. Healing implies the possibility for us to relate differently to illness, disability, even death, as we learn to see with eyes of wholeness. Healing is coming to terms with things as they are.

–Jon Kabat-Zinn, from Letting Everything Become Your Teacher (Delta Trade Paperbacks)


This one has been pinned on my bulletin board for years and, hopefully, inspires the book that I am writing.

In curing, we are trying to get somewhere, we are looking for answers. In curing, our efforts are specifically designed to make something happen. In healing, we live questions instead of answers. We hang out in the unknown. We trust the emergence of whatever will be. We trust the insight will come. The challenge in medicine is not the choice between one and the other. We need both.

--Dr. Paul Epstein, Naturopath

Monday, April 27, 2009

Middle Age


Here's a lovely poem from today's Writer's Almanac (and an old photo, looking back):

Foreseeing

by Sharon Bryan

Middle age refers more
to landscape than to time:
it's as if you'd reached

the top of a hill
and could see all the way
to the end of your life,

so you know without a doubt
that it has an end—
not that it will have,

but that it does have,
if only in outline—
so for the first time

you can see your life whole,
beginning and end not far
from where you stand,

the horizon in the distance—
the view makes you weep,
but it also has the beauty

of symmetry, like the earth
seen from space: you can't help
but admire it from afar,

especially now, while it's simple
to re-enter whenever you choose,
lying down in your life,

waking up to it
just as you always have—
except that the details resonate

by virtue of being contained,
as your own words
coming back to you

define the landscape,
remind you that it won't go on
like this forever.

Sunday, April 26, 2009

I Need a Sugar Daddy



We're always looking for a bike carrier so that Sophie can go on bike rides with us. There are lots of bikes for special needs kids and adults, and Sophie actually has one. But we want one that she can ride in so that we can go out bicycling as a family.

I recently saw this one:

It's called a Trio and it's made by a company in Denmark. When I emailed the owner about it, asking him whether a small teenager with handicaps could fit into it, he emailed me back saying Yes, it's perfect for that use.

Then he told me that it costs around 3950 USD.

That's why I need a Sugar Daddy.

Friday, April 24, 2009

Something I Read


Follow the Difficult Path

Our difficulties are not obstacles to the path; they are the path itself. They are opportunities to awaken. Can we learn what it means to welcome an unwanted situation, with its sense of groundlessness, as a wake-up call? Can we look at it as a signal that there is something here to be learned? Can we allow it to penetrate our hearts? By learning to do this, we are taking the first basic step toward learning what it means to be open with whatever life presents us. Even when we don’t like it, we understand that this difficulty is our practice, our path, our life.

–Ezra Bayda, from Being Zen: Bringing Meditation to Life (Shambhala)

Thursday, April 23, 2009

She in There, She Know, Part 2


I've been meaning to update you on what's going on with The Girl, but despite the thoughts swirling around my head constantly, I'm hesitant to write it all down. What I will write is that the new drug is not working for Sophie and that we're on a wean schedule right now. She should be off of it completely in a few weeks. Weaning is hideous -- despite the fact that it's not helping the seizures, the brain is still somehow accustomed to it and a slow withdrawal is necessary. We've done this over fifteen times, and it ain't pretty.

In the meantime, The Neurologist suspects that Sophie is having a recurrence of a syndrome called ESES (electrical status epilepticus in slow wave sleep) which she had over four years ago. Outside of her diagnosis, this period was the worst experience we had had, so you can figure that I'm pretty upset about the idea of recurrence. We are waiting for a bed at the hospital so that Sophie can have an overnight EEG to determine whether ESES is back (it can only be diagnosed through a sleep study). Again, I won't bore you with the details. It just overall sucks.

On the bright side, the weaning of the useless drug isn't going too badly and Sophie is actually BETTER without it. Go figure. I also have an appointment all lined up in Arizona with a famous homeopath who saved our lives the last time Sophie went through this. The appointment is at the end of May. More on that later.

Finally, the gist of this post is to tell you what The Neurologist said the other day when we were talking about this new situation.

ME: Dr., I just don't understand all of this -- I feel obsessed by it and I'm constantly fighting my own feelings of helplessness. It seems that no matter what I do, what we do, Sophie is the same. What I really don't understand is why she is who she is. So full of something, her self, despite all these seizures. It's what drives me and why I can't stop. Her eyes are full of...

THE NEUROLOGIST: Sophie's genetics have determined that her brain is extremely intelligent. That explains why despite all these seizures she's done remarkable things and why she has so much expression.

I'm weeping, now, when she says this because it's just so AFFIRMATIVE. I hate that I need this affirmation from a scientist, but I do. I do.

The Chinese doctor says, "She in there. She know."

But The Neurologist says it, too.

So, I'm carrying on.

Wednesday, April 22, 2009

Corner View



I've joined a beautiful group of bloggers from all over the world, led by Jane. This week's theme is breakfast, and since I forgot in all the chaos of the early morning to photograph our little corner, here's a paean to AFTER BREAKFAST. When it's quiet and everyone is gone.

Two hours ago, the scene was much different. My youngest BOY is always a grump in the morning, refusing to eat, moaning and groaning. He chose these dry crackers with butter and jam and a couple of slices of melon. My oldest BOY smiles when he wakes up and eats anything agreeably. He, too, spread butter on the thin crackers with another layer of apricot jam. They chattered and quarreled and I pushed them to finish and brush teeth. You know the drill, I'm sure. Before he left, my oldest made me read the beginning of The Witches by Roald Dahl. We wondered if anyone we knew was a witch.

Sophie was still sleeping but woke much later, when all was quiet. She ate peanut butter toast while I sipped coffee with two teaspoons of sugar and lots of milk.

The dishwasher is humming and all is quiet. Sophie is sitting in her stroller/wheelchair, by the window where she is gazing up at the trees. It appears to be a much milder day after three blisteringly hot ones here in sunny Los Angeles.




Click HERE for the links (until I figure out how to copy them here!) and join us around the world as we celebrate our particular corners.

Good morning!

Monday, April 20, 2009

I'm Thinking


I've been quiet, of late, with the updates. Part of it is because I'm thinking. A mile a minute, as you can imagine, but aware, too, that I need to be quiet. That something is happening. I just don't know what.

A long time ago, a woman named Anna who was one of Sophie's occupational therapists said, "Watch out for too many hands."

When you're open to trying new things, when you take advantage of all that is said and thrown in your path, when you're struggling to differentiate between instinct and panic, the impulse is just that. Impulse. And it's wild and erratic and unsettling.

Too many hands.

So that's why I'm just thinking.

Sunday, April 19, 2009

Acorns

This beautiful award was given to me by my wonderfully artistic blogger friend Kimmie. Evidently, the award was created by two women who wanted to show appreciation of the impact their friend Renee made on their lives. The award is meant "to be given to those that, like Renee, are like "the acorn, a small package becoming a tall and sturdy oak giving more acorns, becoming tall and sturdy oaks, giving acorns..."

If I'm an acorn, becoming an oak, then I am nourished by you, my readers and family and friends. By water and sunlight and the constant reaching out of darkness and cool, dark earth toward the sky.

Thank you Kimmie -- it's an honor. And I will tag three others for the honor, as well. For the acorns they sow and for their strength. These are:

Gberger for her bravery and intense spirituality

Jeneva for her wisdom and poetry and advocacy

and

Vicki for her new book that I've had the honor of reading and from which millions of acorns will fall


Better Said



One of my favorite bloggers has written a post HERE.

Instead of commenting, I'll let you read it. And then you can comment here because he has closed his own comments.

I will warn you that the language is pretty bad but oh, so PERFECT. I couldn't have said it better myself (although I think we're one of those families that he's talking about). And if he reads this blog I hope he knows that no matter the severity of the illness, epilepsy is a nightmare, surpassed only by the drugs used to "fix," "cure," or "alleviate" it.

I'm glad he wrote the post, unleashed that anger, that language. It fires me up. (remember this?) And I hope his girl gets some relief.

Saturday, April 18, 2009

I Have a Confession


or more things to post in lieu of bringing you up to date with Sophie.

Ahem.

I was pulled over to day by a Los Angeles City Cop on a motorcycle. I was yakking on the cell phone with my sister -- something I rarely do anymore and not because I don't want to get a ticket. I agree that cell-phone-talking folks are a menace, and in Los Angeles they seem particularly so.

But I was trying to explain the whole new story about Sophie to my sister, and the Bluetooth that is built into my Mazda just doesn't do the trick. I have to sort of shout and half the time the person on the receiving end can't even hear me. Enough excuses for my bad. Anyway, I looked up and saw him driving toward me and he looked right in my eyes and I simultaneously tossed the phone on the seat and unrolled my window and opened my mouth and he said, before me, "You threw it down when you saw me." And I smiled, sheepishly, and sighed and then I pulled over and waited for him to get off the cycle and come over to my window. And here's the shame:

I said, "I'm so sorry Officer but I was talking to my babysitter who is watching my daughter. She has a seizure disorder and I really had to talk to her."

I know you're CRINGING now, and so am I. But it gets worse.

He said, "You know, I have an autistic son." AHHHHHHH!!!!!

I said, "Wow. How old is he?"

He said, "Seven. Let me see your license and your registration and your insurance card."

So I fumbled through the dash and pulled them out and gave them to him. While he went to check my record, the cell phone rang, and it was my sister. I told her that I'd just been pulled and since the last time I'd spoken with her I had been in the middle of telling her about our new woes, she said, "Oh, my God" with just the right amount of irony and incredulity.

Then the cop came back.

"I'm going to let you off," he said. "But drive safely." And he walked away as I rolled up the window.

And guess where I was headed?

The Catholic gift store to buy some First Communion gifts for Oliver who is making the sacrament next week.

Oy vey or should I say Jesus Christ.

My penance was a fresh bout of tears that came in between some giggles, all by myself and loony in my car.

And I will tell you what's up with The Girl, just not now.

Friday, April 17, 2009

BRUUUUUUUUUUCE!!!!!


I was one of those girls, last night, who stood up with arms up high, clapping and swaying and shouting the lyrics with chill bumps. I saw Bruce Springsteen last night in a big, ole rock n roll concert here in Los Angeles. I don't think I've been to one of those in twenty or more years and I've never seen Bruce.

It was awesome.

The image that stays with me is looking down on the hundreds of people on the floor, their arms and hands reaching high above their heads, waving in unison, pale in the light like glow-worms or the necks of swans or I don't know what. It was surreal and lovely and wild all at once.

Here's a video of one of my favorite songs that he played. This is from a long time ago but it's so, so sweet:





And thank God I had it today to lean on because I got the update on The Girl's EEG. Not good. We're looking at a recurrence of the big, bad syndrome that Sophie developed over four years ago. I'm not in the mood for details right now so just say a prayer.

All will be well. We've got a plan -- I just need to draw on those ever shrinking reserves and carry on.

Thursday, April 16, 2009

It's Here!

Today I received my free copy of this:


My essay, "Invisible Child" is on Page 91, along with what look like a host of other chapters by wonderful writers.

Feel free to order the book HERE or go to your library or better yet your independent bookstore and get a copy.

And enjoy!

Wednesday, April 15, 2009

I'm Astonished


I was reading a fellow blogger's post today and am left speechless. Astonished. Her blog and mission is great -- but this post is particularly meaningful to those of us with children with severe disabilities. I'm not sure how difficult it is to get the services she describes as available, but the array is SENSATIONAL. She is a resident of our northern neighbor, Canada.

OH, CANADA!

Check it out HERE.

And then tell me what you think.

Tuesday, April 14, 2009

A New Gig


Here's a link to a new online journal for parents and people with epilepsy. I'm on the editorial board and have an article in the first edition which came out yesterday.

Click HERE

Monday, April 13, 2009

EEG Time


I forgot to mention that we had an appointment today for an EEG. This wasn't an emergency or anything, just an attempt to get more information, try to figure out what the hell is going on with Sophie's dysfunctional brain. She's had a million and one of these things and they never tell us anything other than that her brain is incredibly dysfunctional. Honestly, I don't know why I keep doing them.

"It's better to cover all the bases," The Husband remarked the other day. "That way you won't regret NOT doing something."

Wise words to remember when I am tempted to rue the day we tried the new drug. The update on Banzel is that it's just not working. Sophie is on the full dose and feels drowsy much of the day. You might think that's not so bad except for the fact that when she's not sleeping, she's seizing. I'm starting to think that the constant state of drowsiness might be causing the seizures. Sometimes I hold those tiny orange pills up to my eyeball and wonder if perhaps they're really just made of sugar. Anyway, The Neurologist was on vacation so we decided to just start weaning the drug. I've taken a tiny bit away and we'll sit here for a while and reassess. (I've also started taking her back to the Chinese Doctor who is giving me those nasty teas that I wrote about here).

Anyway, back to the EEG. We went to a large hospital here in Los Angeles, a different place than we usually use. I waited for almost an hour after we arrived for our appointment on time (no surprises there) but it gave me a chance to jot down some notes (thank God for writing and for blogs). Here are a few of them:

1. our descent into the lowest depths of the parking garage was epic -- I don't think I've ever driven round and round so far down ever and I was struck by that symbolism

2. when I entered the hospital I was particularly mindful of my physical reactions -- a sort of PTSD -- beating heart, short breaths -- it always surprises me how sensitive my body is

3. I pushed Sophie in her stroller wheelchair for what seemed like forever through a labyrinth of corridors and hallways. When I glanced to the right and left through doors with ominous sounding names I thought of that wonderful phrase THE PROCESSION OF THE DAMNED

4. a young adult, a boy, in a wheelchair in the neurology waiting room with his over sized mother. His shoes were black and enormous and he wore a white terry cloth bib

5. a girl like Sophie in a brown velour track suit with a tilted head and wild eyes

6. a sweet teenage boy holding a ziplock full of prescription medicine bottles, flanked by his smiling parents.

We went into the EEG room and an incredibly efficient Egyptian technician ( I asked him where he was from and he told me) named Alex proceeded to glue the electrodes on Sophie's head while I held her head down. Which leads me to the main point of this entire post -- sorry for the incredible number of digressions --

When are these people going to come up with a better adhesive than glue for the electrodes?

AND



The reason for the shot above is not exploitation but to demonstrate that they use COMMON MASKING TAPE to hold the gauze in place that, in turn, assures that the electrodes won't fall/be pulled out. I wish I'd had a movie camera to show you how efficiently this guy ripped up that roll of masking tape. He would pull a strip off, tear it with his fingers and STICK IT TO THE WALL. Then we had enough strips, he just started wrapping them around and around Sophie's head.

"Watch her hair, please," I said at some point. He paid no attention but I didn't really mind because it was just so damn absurd.

You'd think that if we have the ability to read brainwaves -- hell, I'd go further and say talk on cellphones -- someone would have thought of an easy wash-away glue for administering EEGs. As it is, Sophie will have the stuff flaking from her hair and scalp for weeks.

As for the masking tape, my very funny friend compared it to the duct tape that they used on some space shuttle. And we know what happened to that.
Posted by Picasa

Newsweek Cover Story



Check it out HERE.

Sunday, April 12, 2009

Easter


We woke this morning to baskets of candy and toys. Henry fed Sophie a piece of a yellow marshmallow chick, the Peeps that are absolutely necessary in any Easter basket that the bunny brings to a house where I live (I hate those things but they're from childhood, after all, and tradition must be honored). Then The Boys and I left for church. We had planned on going as a family, but as things go, The Girl had a seizure and had to stay at home with The Husband. Her lavender bathrobe bunched up under her chin, she was sleeping when I bent over her and kissed her good-bye.

The Boys ran upstairs to the balcony, where hordes of the youngest children and their parents generally sit, but because I believe that I've graduated from the noisy, hot atmosphere of the balcony, I chose to stand downstairs toward the front of the church in the side aisle. I waved and smiled up at the boys as Mass began.

Easter Mass is joyous and jubilant whatever the strength of one's faith. I lifted my eyes and noticed, again, something different in the beautiful church that I have been a member of for at least eight years. Up, up, up at the highest cross-point (and my church architecture language is atrocious, I'm sure) were what looked like wooden symbols -- a shamrock, a funny pointed star, a circle (I think) at even intervals all round. They were the most beautiful green and looked even more startling against the dazzling stained glass windows, whose beauty lies more in cliche, I think, that also ring the church.

As the priest spoke and opened the mass, my thoughts went back to Sophie, purple (the color of Easter) in her bed, and I felt the prick of tears in my eyes and the stirrings of sadness and maybe a little self-pity. I couldn't catch myself -- and like the cliched windows, as the music soared around me, my tears started falling and I had to wipe them with my fingers and blink them away.

I got a hold (is that the expression?) of myself and stood, listening and singing and praying until the priest, one of my favorites, began his sermon. It was the usual Easter Sunday talk, complete with the real meaning of Easter, the Resurrection and what it's all about. But then the priest spoke of complaining and suffering and in some roundabout way spoke of gratitude and recognizing what is good. We all know from popular culture, pop Buddhism, Oprah, even, that listing the things one is grateful for can be a necessary step toward more happiness. In a simple way, the priest reminded us to be grateful for something quickly, right after a negative thought or emotion. He spoke of neurons and how negative thoughts, trauma and emotions are imprinted in the brain but how we can also imprint the positive as well. I remember reading about this somewhere and I realized that I'd forgotten it. That I often forget to be grateful.

I have forgotten in my sadness how happy I am as well.

I thought of Sophie in her purple robe at home, unable to be with us on Easter Sunday (along with The Husband) and felt sad. But my sons were beaming and waving at me up in the balcony, and at the end of Mass, I got to hold the most beautiful baby of a friend of mine. A little girl with a smocked pale pink dress and a tiny pearl bracelet on her chubby wrist. A little baby who fit just right on my hip and smelled like lavender when I bent my head to the soft hair on her round head. She reached her hand up, just like Sophie and touched my cheek and opened her eyes wide. When I handed this perfect child back to her mother (who has also suffered unspeakable grief), I thanked her and told her that though my own daughter could not be with me, holding her daughter was my Easter gift.

Here's a poem that celebrates the day as well:


A Prayer for the Self

by John Berryman

Who am I worthless that You spent such pains
and take may pains again?

I do not understand; but I believe.
Jonquils respond with wit to the teasing breeze.

Induct me down my secrets. Stiffen this heart
to stand their horrifying cries, O cushion
the first the second shocks, will to a halt
in mid-air there demons who would be at me.

May fade before, sweet morning on sweet morning,
I wake my dreams, my fan-mail go astray,
and do me little goods I have not thought of,
ingenious & beneficial Father.

Ease in their passing my beloved friends,
all others too I have cared for in a travelling life,
anyone anywhere indeed. Lift up
sober toward truth a scared self-estimate.

"A Prayer for the Self" by John Berryman, from Collected Poems 1937-1971. © Noonday Press, 1989.

Saturday, April 11, 2009

Not So Easter


Yes, I know that it's almost Easter and this post has absolutely NOTHING to do with it.

I heard this song on the radio the other day and I can't get it out of my mind. It plunged me back to around kindergarten when I'd come home from school and have crackers with cream cheese and jelly while my mother and I listened to Glen Campbell. I think we danced, too.



Thursday, April 9, 2009

Trapeze Artistry and Humor



I think it was Mark Twain who said that behind all humor is sorrow.

I believe that.

I have a good sense of humor, actually, a superb sense of humor. An old boyfriend once told me that I was the person for whom humorists wrote. I liked that comment, felt flattered by it. I guess that means that I appreciate a good humorous anything, although I admit to wanting it tinged with a bit of intelligence (I do hate those gross-out movies and slapstick was never much for me). I giggle like a girl at a couple of my friends' incessant silly jokes (they both write for television), and I don't think sorrow is behind their humor.

My sense of humor can be as dark as it gets and is often the only thing that sustains me. I would add faith in there as well, but I think it's more a faith that God provides something for me to laugh at or see the absurdity of, just when I need it.

I laugh, therefore I am.

That was a riff, I think, on Voltaire, but it's Pascal that I really love. I studied Pascal as an undergraduate when I worked on an arduous double degree in English and French literature. I despised French, except for some medieval stuff and, particularly, Pascal.

If I saw no signs of a divinity, I would fix myself in denial. If I saw everywhere the marks of a Creator, I would repose peacefully in faith. But seeing too much to deny Him, and too little to assure me, I am in a pitiful state, and I would wish a hundred times that if a God sustains nature it would reveal Him without ambiguity.
pensee no. 229

And what is all this about? I watched Sophie have what seemed like hundreds of seizures today -- the small ones, the big ones, the drooling kinds, the physical jerking. Etc. I heard the voice of my Chinese doctor in my head along with all the mindfulness training advice and I tried, I really did, to remain calm and mindful, to go with the flow, to not be "attached" in that desperate sort of way. I can do these things, often in a powerful way, but I'm also aware of the thin, thin rope upon which I walk and sometimes hang like a trapeze artist, the rope that threatens to buckle then come loose, then probably snap if I let

it


it only takes one


misstep


and then



that's it.


I'm a wreck, instead of a balancing act.

Humor is peeled back and only sorrow shows.

Trapeze artists are in the circus, after all.





***CORRECTION: Thanks to Steve, one of my visitors, and another good friend who always wants to be anonymous, I "remembered" that "I think, therefore I am" is Cartesian or from Descartes. Thanks!

Wednesday, April 8, 2009

Road Trip Part 2


I LOVE San Francisco. I love the look of the city, the colors and the steep hills and the smell of the sea. I loved the light, especially when the sun went down and it illuminated the lanterns and chintzy stores in Chinatown.




The boys loved it, too.




They picked out five dollars worth of -- well -- crap. Henry wanted a bobble head Obama, but that cost too much, and Oliver got five boxes of Chinese firecrackers and one paper dragon. He wanted one of these but he'd already spent his money.


The junk food eating continued.



We went to the requisite spots. Lombard Street:


And Ghirardelli Square, where there was more junk:


Oliver insisted on that sundae -- a Rocky Road extravaganza -- made of three scoops of ice-cream, marshmallow topping, hot fudge, whipped cream, nuts and a cherry. He actually ate the whole thing but not before I had admonished him that he might get sick. That face is his expression of annoyance -- with my admonition and my picture-taking. Henry scarfed down a warm hot fudge brownie sundae, and I stole bites from both. I'm a bit of a pastry snob, and I had to admit that the fudge sauce was damn good.

We went to the Exploratorium, which was fantastic. The boys ran and I strolled from exhibit to exhibit, all interactive.


This is my favorite photo. It really made me think about perspective and my own tendency to lose any sense of it.


We even watched a scientist dissect a cow's eyeball.



And that wasn't nearly as creepy as the trip we took a day later to the Winchester Mystery House. Evidently, the widow of Jesse Winchester, the creator of the eponymous gun, had to placate the spirits (she was a spiritualist) who directed her to pay penance for the many deaths from Winchester guns by building onto a house 24 hours a day for 34 years. There were over 110 rooms, staircases that led to nowhere, windows and doors that opened onto nothing -- very CRAZY.


Between the prisoners on Alcatraz and the idea of spirits directing one to build, build, build, Oliver was definitely creeped out.



So that's a bit of my travelogue. I'm grateful for The Boys and, of course, The Husband, who enabled us to "get away."

Now, I'm home and


Tuesday, April 7, 2009

Road Trip Part 1


As you know, I left a week ago for San Francisco with The Boys. It was good to get away. We listened to the first Harry Potter in the car. Can you believe neither of my boys has read the book? They have no interest in it -- contrary kids, right? When we got tired of that we played silly road games. And talked.

Henry said, at one point that he just didn't understand how it all got started. When I asked what he was talking about, he said, "You know, God and the world." Oliver said he couldn't believe that there was nothing in the beginning and then something. They looked out the windows a lot. And argued a little.

Along the way, I let all rules fly. Meaning we stopped at a 7-11 and they bought MULTIPLES . Of candy . "Really?" they enquired when I said go ahead.

He's really not that full-cheeked! Just incredulous that he has TWO candy bars to eat. And his brother one of those nasty baby bottle candies.

We stayed with my aunt in Los Altos for a couple of nights and made a trip to Sonoma where we visited a mission. I forget which one, but the boys knew everything about it. I guess they are learning something at that crazy charter school.



In the courtyard, we wished on a fountain.

You know what those wishes were all about.

Henry took one of the only photos of me that I didn't erase. I kind of like it.


We took a boat over to Alcatraz which was Definitely the highlight of the whole trip.


The Boys were excited and spooked, particularly Oliver who has a long history of fascination/terror of jails (that deserves another post). Here's a shot of him in a cell with a look on his face that I'll never forget.

Remember that show "Scared Straight?" I do and I was a good girl, going to a fancy prep school in the South. I'll never forget it (while those movies we saw in drivers' ed still make me laugh). Oliver actually peppered me with questions through the whole tour. He was fascinated and a bit anxious.

"Do you ever think I'll go to jail?" he asked me? He's SEVEN YEARS OLD.

"I hope not," I replied.

Henry was just plain fascinated.



Lest you think I'm a sicko for photographing The Boys behind bars, here's this:


And this:


Because flowers actually grow on The Rock.

When we left, we trudged through Fisherman's Wharf and bought more candy. We tried on Crazy Hats in a crazy hat store which is somehow obligatory in a tourist area.


And despite the pompoms, I'm a little alarmed at the resemblance to my long-deceased Italian grandmother. I swear, though, that I don't have a little bitty moustache, yet.


Stay tuned for PART 2.

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