When I have nothing to post

I'm parched.

Thirsty for inspiration.

Stasis. (which, in our case, might be good because god forbid we should have some dull days around here...)

Here are some photos that are just plain easy on the eye, plucked from the archives.

The Mermaid

The Mermaid and Her Own True Love

The Three Muses

Reflections on a Purple Room

The Brothers

I Love Where I Live

My Beautiful Nephews

The Cousins

Relief

One of My Favorite Pictures

A Rare Quiet Moment

Heroism

No. This isn't going to be an intense, sobering post like the ones I've written lately. And I should thank all of you now, bloggers and friends for all your wise and supportive comments and words. I think our discussion of broken children and the like was incredibly stimulating and illuminating. The last few days have been a time of great contemplation for me as I mused about everything written and felt a renewal of peace and even resolve in myself.

But I've just peeled myself up off of my bed where I've been lying the past hour, propped up by pillows and pretending to be absorbed, with my son Oliver, in this book:

And that's why the title of this post is HEROISM.

(and the photo at the top is a candid shot of my boys destroying our gingerbread village that we made before Christmas in what has become known as The Annual Gingerbread Stomp.)

L'Arche

On the wonderful website Speaking of Faith, I am listening to an interview of Jean Vanier, the founder of L'Arche, an organisation of communities made up of the developmentally disabled, caregivers and community members who live together. I am especially struck and moved by this wise man's use of the word brokenness to describe the people with whom he has worked for so many years. 


The central countercultural message of L'Arche happens in the course of daily life in small communities. The suffering and "imperfect" bodies and minds of the "core members" of each community — people with mental and intellectual disabilities — are not treated as a problem to be solved. They are honored as a mystery of the human condition — the simple fact that some human beings have been and always will be born with brokenness that is physically rooted, visibly debilitating. 


As many of you in the blogging/disabled community are aware, just last week a dialogue was "opened" once again on the website Hopeful Parents when one columnist took offense to the use of the word broken as a descriptor for a child with a disability. While many people commenting agreed with the post, many did not and eventually the comments deteriorated into vitriol and coarse language (and very off-topic), so much so that the comments were eventually turned off by the administrator. Over at Fighting Monsters with Rubber Swords, Robert Rummel-Hudson continued the "debate" with some very eloquent and sharp-witted words. I've been thinking about the concept of broken-ness in our children with developmental disabilities since and believe, really, that coming to terms with broken-ness is a deeply spiritual undertaking. When I began to listen to Mr. Vanier's thoughts I became even more aware of my own very strong feelings regarding it.


My friend and fellow blogger Jeneva at Busily Seeking...Continual Change recently made a comment on one of my posts completely unrelated to the debate about broken-ness but, I believe, relevant to any discussion about accepting, fighting for and attempting to fix our broken children. Here is what she said:


Is there a difference, do you think, between resignation and acceptance? I always think of acceptance in our cases as false, perhaps a form of false piety. Resignation seems a more appropriate term--but then, it also sounds a bit defeated. I don't want to be defeated by this. Is there a way to think about our situations without thinking of them as a battle?


I'm not sure where to go with all of these thoughts moiling about in my head. I have lived my life for the past fifteen years carrying Sophie, balancing the both of us on a tightrope, stretched between two very tall buildings. When I began the walk, I left the first building with my broken baby in my arms and took very, very shaky steps toward that second building which was clouded but for the end of the rope firmly anchored there. I paused at times and barely balanced; a wind came along and nearly blew me off and her out of my arms. I hung a few times by my toes and she hung below me, her fingers entwined in mine. But somehow, I always managed to right myself and continue on the path toward the other building. I think that other building might be the building of resignation or perhaps acceptance and when I reached that side my baby no longer needed to be fixed. She was perfect, in fact, just as she was, still in my arms, her soft curls in my face, her aquiline nose pointed outward. But you know what? Like Philippe Petit who walked between the Twin Towers many years ago, I have never stopped at that second building. In fact, I've turned around and turned back toward the first and found my life somewhere in between. And in that in-between I've been able to jump and leap quite joyfully most of the time, as has Sophie, despite the abyss that lies below us.

He'd probably never make it through airport security

Happy New Year!

2010

I have wings of desire.
I didn't make that phrase up, desirous of wings. It's the title of one of my favorite movies by Wim Wenders. I couldn't possibly do it justice by reviewing it or even telling you about it, and I'm sure that there are those who thought it ponderous and pretentious.
It is dark and weird and light all at once. It has angels and circus performers and Columbo.
I'm thinking about it as I watch the old year dissolve and the new year tick in. I left a party in tears, pushing Sophie in a stroller, regretful that I'd come at all. I left my two little boys at the party to be driven home by friends, and when I said good-bye they ran by me shaking noise-makers, dripping lemon squares and shouting.
I have wings of desire.

Blue Moon

As most of you probably know by now, tonight will be a blue moon, or the second full moon in a month. That this happens "once in a blue moon," AND that it's the last day of the year, ushering in a new decade, seems especially auspicious to me. Or at least I'm going to insist on its auspiciousness. And it's a good thing, because I've very little inspiration this week and sort of dreaded the whole New Year thing -- the resolutions, the passing of the old, the ushering in the new, etc. I've never been much on the new year's eve celebration thing, preferring to go to bed early and pretend it's just another day.


But you know how much I love the moon, and the Blue Moon makes me feel good. And I read this article in Salon today which, although a bit on the overly new-agey style, makes me feel good, too.


The last day of 2009 is a doozy -- triply auspicious. Not only is it the eve of a new year, a new decade no less, there will be a full moon, a lunar eclipse and a blue moon to boot.

When a month is graced with two full moons, the second one is called a blue moon. You know, the once in a blue moon blue moon. The blue moon cycle is 2.72 years, making it a special, if not rare or unexpected occasion. The last blue moon month was May 2007 and the next will occur in August 2012.

On average, there will be 41 months that have two full moons in every century, so once in a blue moon actually means "once every two-and-nearly-three-quarters years."

Since calendar months of 30 and 31 days are longer than the actual period between one full moon and the next, which is 29.53 days, the surplus hours and days of each month, each year, accumulate until eventually there is an "extra" full moon in one month. Rather like a leap moon, a blue moon is a great big bouncing blue bonus.

Which is not to say that it looks blue. That sort of blue moon is altogether another phenomenon, wherein the light of the moon appears to be tinted blue. That effect is actually caused by atmospheric pollution created by particles -- usually smoke, sand, or volcanic dust -- from a terrestrial disturbance, which creates a color filter effect. The latest blue-looking moons were created by forest fires in the American west and oil field fires in Iraq.

Although blue moons do not cast an actual blue shadow, their very existence is a symbolic celestial reminder, a message out of the blue, as it were. A radio signal from the Great Goddess of Outer Space to us -- Her very naughtiest and sometimes least sentient children. She is broadcasting a plea for our loving attention.

If, on the night of a cerulean moon, we close our eyes and sit very still, take in great draughts of air, sigh deeply and open our hearts, we will be able to hear Lady Luna sing the blues. Broken-hearted, She watches down on our out-of-whack world, and She weeps.

And Her pain is our pain. In losing our connection to the moon and Her cycles, we have lost track of our own. We have forgotten how to live in conscientious sync with the workings of the world.

We no longer see ourselves as active and response-able participants in the connective universal plan, but rather, the boss of it. Ironically, this leaves us feeling disturbed, disempowered, disconnected, disconcerted, dismayed and disheartened. Powerless. Stripped spiritually naked and scared to death. This is not only sad it is dangerous.

In all my years of cross-cultural ritual research, I have never come across any mention of traditional ceremonies with which to mark a blue moon. But I sense that a contemporary one is in order. Crucial really. I say, let us seize this once-in-a-blue-moon opportunity to tranceform our sadness into strength.

We can start by stopping. Taking the time, noting the process, tuning in, staying with the program. Listening with open hearts to Mother Moon's melancholy lament.

This New Year's Eve, I propose a lunar rite of passage into the power of positive change for the next decade: A True Blue Ceremony in the Spirit of Universal Beneficence. 

It seems suitable to me to strike a blue mood. The lights are shaded blue, of course. Blue pine incense is lit. We are bathed in an airy wash of cool blue. Dressed in our best blues, we sip some sort of berry infusion. Drink in its navy depths. We put bluebells in our hair. We have become like the Tuaregs, the "blue people" of the Moroccan Sahara whose skin becomes imbued with the indigo dyes of their robes. A becalmed blue aura surrounds us. We are emerged in an ocean of blue: the blue of the sea, the blue of the sky, a morning glorious blue.

We symbolically cleanse and bless the streams, the rivers, the ponds and lakes, the big blue sky, the very air we breathe -- the entire biosphere. We use bluing as our purifying agent. It's what our mothers and grandmothers bought in bottles or little wrapped cubes, to add to their wash. The same as those little blue flecks in modern powdered laundry detergents.

We dip the blue balls into water and paint emblems on each other's foreheads with the cobalt paste. We anoint each other with blue blessings. We pledge our affinity as co-creators of the working blueprint plan for a new paradigm. We pray for possibility, for a new perspective. We light bright blue candles for illumination and spiritual guidance.

We chant for peace. We chant. We drum. We dance. We spin for peace, for passion, for promise. For the power of our path and purpose. We slow to a stop. Stilled. Sated. Steady. Strong. The blue air is charged. We are changed, united in azure energy.

Ready to begin a new year a new way. -- Donna Henes

So from me, at a moon, worn as if it had been a shell, I wish you a Happy New Year tomorrow and onward!

.

Getting Ready

for a blue moon. See you tomorrow!

The Road Taken

Master of the Osservanza Triptych - St. Anthony Abbot Tempted by a Heap of Gold

I've written before about drugs, about new drugs in particular, about the drugs that are supposed to stop the seizures. I've said that after eighteen trials of drugs, I wouldn't give Sophie another unless Jesus Himself offered one to me.

Sigh.

We've given Sophie yet another drug. When I open my eyes each morning, I steel myself for the morning bouts of seizures, and they really ARE bouts. I have to literally protect myself from her flying limbs and protect those flying limbs from hitting furniture. Sometimes I have to lie across her to prevent her from throwing herself off of the bed. Do these seizures hurt? I hope not but can't be sure. I do know that when they subside, sometimes after forty-five minutes, we are both exhausted and I'm usually in tears. And this is partly because I've done a fine job of cursing the universe, yelling at God, berating myself for the yelling and otherwise acting like a desperate woman on the edge. I look at my daughter, her brown eyes like pools and I stroke her cheek and whisper that I'm sorry, I'm sorry, this must be better.

This one is called Clobazam and it's a benzodiazepine. For those of you who don't know your drugs, benzos are drugs like Valium, formulated to sedate, calm down, make comatose. The tricky thing about them is that one builds up a tolerance and then one must increase the dose and then increase again and then before you know it, seizures are coming through, breaking through and the side effects are taking over and  then one must wean the drug from the body. And as anyone knows who has given antiepileptic medications unsuccessfully to one's child, the wean is sometimes worse than the seizures themselves.

I remember long ago thinking this is my choice? when faced with the decision of which drug to try next for my baby Sophie. One drug could cause aplastic anemia and the other vision loss. There were the side effects of a suppressed immune system and terrible thrush or regression in development. These were our choices?, I'd laugh, darkly to my husband in the dead of night.

Roll forward almost fifteen years.

Jesus didn't give me Clobazam.  I actually got the prescription from The Neurologist about six months ago, who faxed it to the drugstore in New York City on the Upper West Side who got it from Canada who then mailed it to me. Throw in there, too, the transaction itself, the transfer of monies through credit cards because the insurance company doesn't cover it because it's not FDA-approved because it's probably not worthwhile economically for the FDA to approve it because there are other FDA-approved benzos but they don't work, so never mind (and any of you laggards out there who think that 1. medical decisions are being made between you and your doctor and 2. the USA has the best healthcare system in the world and 3. you fought against reform like a good Republican should or are settling for the measly compromises that are being crafted, well, wake up because this is how many of your fellow citizens with children with chronic diseases have to live). And when I received it in the mail, the little innocuous white box of one hundred pills, each pill a startling white in an indented plastic container with a bit of foil on the top, I put it, promptly, into my medicine cabinet in my bathroom, far away from the girl.

I was waiting for a sign, I suppose, and didn't mean to cave. Because that's how I look on it, actually, trying a drug that Jesus, Himself, didn't offer me. There was no sign, really, only a cry of enough! that came out of me one morning, and it's a very dark cave that I crawl into when we try these things, a cave that beckons me, separate from my instinct, all my bones and thinking brain and aching heart but nothing else of me. I crawl down that dark passageway each time I take the white pill and split it in half along the indented line, toss it into the back of her mouth and quickly give her the cup of juice to wash it down.

I never, never get used to it.

I'm happy just to look at you

Kim Peek, Inspiration for ‘Rain Man,’ Dies at 58

I read this startling and moving obituary tonight and encourage you to do so also and learn about this fascinating man. Click HERE.

a little Joyce, just because

Winter - Andrew Wyeth

A few light taps upon the pane made him turn to the window. It had begun to snow again. He watched sleepily the flakes, silver and dark, falling obliquely against the lamplight. The time had come for him to set out on his journey westward. Yes, the newspapers were right: snow was general all over Ireland. It was falling on every part of the dark central plain, on the treeless hills, falling softly upon the Bog of Allen and, farther westward, softly falling into the dark mutinous Shannon waves. It was falling, too, upon every part of the lonely churchyard on the hill where Michael Furey lay buried. It lay thickly drifted on the crooked crosses and headstones, on the spears of the little gate, on the barren thorns. His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead.


-- the last lines of James Joyce's The Dead


You can listen to the lines read in John Huston's movie The Dead by clicking here. It's worth watching the whole, beautiful scene, but if you're impatient, the snow falling faintly, faintly falling is around four minutes into the six minute clip.

Just Pictures

Peace on Earth and Mercy Mild

Merry Christmas!

I Bring You Great Tidings

My favorite painting is The Annunciation by Fra Angelico from the fifteenth century, and when I first saw it over twenty-five years ago, I had just graduated from college and was traveling through Europe with two girlfriends. The painting hangs at San Marco, in Florence, and I can still remember how much it affected me when I literally "came upon it" wandering those ancient halls. Many years later, I visited the painting again and was struck not only by its beauty but by the resignation of its main subject, Mary, as she receives news from the Angel Gabriel that she is to bear the son of God. I wrote about the painting and my response to it and the essay was published in an online journal called Slow Trains. 

At Christmas, I often think of Mary and the Annunciation and what I perceive to be her resignation. I think about waiting for a baby to come, both that ancient story of the baby Jesus but also of my own three babies. I think about waiting and expectation and the dimming of expectation, of the sadness inherent in Mary's waiting and resignation. I think about waiting for Sophie to stop having seizures, waiting for her to stop having this seizure. I think of my resignation in waiting and how it pales in comparison to Mary's when that strange and terrible Angel came bearing that strange and terrible news. I think of how, at best, my own resignation comes purely from Grace.

Waiting and resignation and acceptance and peace.

Yesterday, Renee at Circling My Head posted this Christmas song. I'd never heard it but felt it was perfect for my Christmas Eve post.

The Angel Gabriel from heaven came
His wings as drifted snow, his eyes as flames
"Oh hail" has said he to Holy Maiden Mary
(to holy mary)
Most highly favoured maid Gloria
(Most highly favoured maid Gloria)

Forknown a blessed mother thou shalt be
For generations loan and honnaly
Thy son shall be Imanuel th'as years forsawt =(forseen)
Most highly favoured maid Gloria
(Most highly favoured maid Gloria)

The gentle Mary neatly bowed the head
"To me, be as it pleaseth God" she said
"My soul shall whole and magnify this holy maid"
Most highly favoured maid Gloria
(Most highly favoured maid Gloria)

Of her Imanuel, the Christ was crossed
His Bethlehem all honor Christmas ghost
As everyone through out the world will Heaven save
Most highly favoured maid Gloria
(Most highly favoured maid Gloria)

Have a blessed Christmas Eve!

Winter in Los Angeles

I know. I know. I spend an inordinate amount of time talking about, justifying and defending Los Angeles, and the weather here, well, everyone knows it's just about perfect. I spent my entire life until a dozen years ago on the east coast and I don't miss the weather one tiny little bit. We get just enough cold, just enough heat and just enough humidity to make it just fine. Yesterday, a spectacular wind storm sprang up from out of nowhere, whipping the palm trees into a frenzy. It was almost dangerous to go outside, such was the debris flying through the air. Our backyard was a veritable dump for dead and dying palm fronds. When the wind died down, the boys went outside and dragged everything into a big pile.

I guess it's a sort of igloo or snow fort, Los Angeles-style!