Thursday, December 31, 2009

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!


Monday, December 28, 2009

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.


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.

Sunday, December 27, 2009

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.

Thursday, December 24, 2009

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!

Wednesday, December 23, 2009

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!

In keeping with my Christmas at the Koreatown carwash

I bring you Norrywood. This house is about 1/2 mile from my own. On a typical day, the semi-circle of Michelangelo's Davids sparkle in the sun behind a white fence and in front of several very large, luxury cars that are each painted orange. The word is that a couple of music producers live there and long ago scandalized the otherwise posh neighborhood with their love of Italian sculpture (I, personally, love the idea of bugging the old guard). When the King of Pop died last summer, each David was clad in a tiny, Michael Jackson-style jacket. I curse myself for not taking a picture. But it's Christmas when the place really shines, and despite a less than stellar year in all things economic here in Los Angeles, Norrywood has outdone itself. Unseen in this photo, a black Santa sits on a bench, his hand raised in a black power salute,  with his beloved Mrs. Claus. There's a six or seven foot statue of the numbers of the year, 2009, all gold and glittery. And the addition this year of the giant red crown on the roof, overlooking an enormous cut-out of just who exactly is it? made all of us squeal with pleasure when we rounded that section of Third Avenue and saw it in all its splendor this week.I don't even think I could describe what it looks like at night, lit up and festive and oh-so-Christmas-in-a-stereotypical-LA-way.

Trust me. It's fantastic.

In fact, we don't need a carol of the day today. What we do need, though, is a way to take a photo at night so that you can really SEE the glory of Christmas. All of it. Click on the picture to really check out the details.

Tuesday, December 22, 2009

Korean Carwash Christmas Carol of the Day

Here in Los Angeles, the land of blue, sunny skies and cars, there are carwashes. A lot of carwashes. You can pretty much get your car washed at any corner of the city. And when I say washed, I don't mean you stand and spray the car and do it yourself. The carwashes here are deluxe, and even in the most questionable neighborhoods, you can pull into one, hop out and watch as a small army of men take over your vehicle with their rags and sprays and polishes. And unless you have a fancy, luxury car and want some kind of fancy, luxury mini-detail, you rarely have to spend more than $8-$10, especially if, like me, you go to Wednesday Ladies' Day. Most of the carwashes are like mini-malls where you can practically grocery shop, while you wait for your car.

The carwash I go to is in Koreatown, a fascinating and huge part of Los Angeles (from what I understand the largest percentage of Koreans, outside of Korea reside in Los Angeles) renowned for its restaurants, cheap tech shops and groceries. Whenever I go to this carwash, I pick up a boba and wander the hallway that today was filled with the most amazing Christmas decorations one would ever find at --- a CARWASH. There were lit reindeer and polar bears and penguins staggered with massage chairs draped in lights. The faux-Italian doorways preceded Roman pillars draped with cotton snow and fake presents.

It was astonishing and hilarious and not at all out of place. It's really why I love this crazy city.

Sunday, December 20, 2009

For Mercy has a human heart, and Pity a human face;

And Love, the human form divine, and Peace, the human dress.
Then everyone, of every clime, that prays in deep distress,
Prays to the human form divine—Love, Mercy, Pity, Peace.

--William Blake

Satchmo Sunday

Friday, December 18, 2009

I'm a little tired

Disney Hall, Los Angeles (photo courtesy of

of posting carols and, frankly, a little tired of posting in general. I'm paralyzed, actually, because I just have so much to write I don't know when and where and how much. I'm tempted to number all the things I've been meaning to write about but sometimes this stream of consciousness thing works really well for me and actually begins to help me craft the stuff I write offline so here goes. I went, the other night, downtown to Los Angeles' Disney Hall, the most spectacular venue to hear music that you might ever go to, where inside it's like you're sailing on a giant, blonde, glowing ark or what my friend Sylvia says is like the inside of some animal, the skeleton of the animal all around you, and those things sort of go together, my being on the ark and her inside an animal, perhaps it's Noa's Ark? But we heard Handel's Messiah which, I realize, is really an Easter thing but somehow that Hallelujah chorus just has to be heard at Christmastime and we did wait, patiently for that chorus through all the tenors and the sopranos and the contralto who was a man with the highest, highest voice, so high that my girlfriends and I discussed the difference between a contralto and a castrato and really, that high male voice just doesn't appeal to me and makes me want to burst out laughing like I did with my sister sometimes at church when we were little girls and the set of the lady in front of us -- her hairdo just made us break into silent, shaking peals of laughter. Sticky beautiful spiky stars hung from the ceiling of Disney Hall, and we were floating on the sea of song with the sky and the stars above us and all those beautiful voices and I kept thinking how religious music just HAD to be inspired by some sort of Divine because how else could something so heavenly just emerge from a little man's head? Not to mention that strange and human wonder called a voice. Somewhere in Part II or Part II came the recitation of the phrase and we shall be changed. And it was accompanied all along with the most clear and almost heartbreaking trumpet, like notes suspended high in the air and you could almost see them dropping or perhaps even rising or wafting like smoke in the air. And we shall be changed grew louder and louder in my head until it was all I could think so in order to get through the rest of the concert, I pulled out my little writing book and noted
and we shall be changed. And what's important, somehow, is the word and and I don't really know why. Here it is:

Wednesday, December 16, 2009

A Christmas Carol for my Dad

Corner View - Books

This is a lazy re-posting for my Corner View folks. The theme is books -- actually my very favorite thing in all the world, but since it's two weeks to Christmas and things are crazy around here without Christmas, I'm reposting. Enjoy! And for more Corner Views, see JANE.

I like to say that the only constant in my life is reading. So I thought I'd roam around my house and show you where I keep them all. I live in a very small house currently over-run with books. The only books I get rid of are the ones that I despise (very few) or those infernal Scholastic paperbacks that my kids pressure me into buying. My bedside table is above. And yes, that is a Kindle. I have nothing but raised eyebrows for those who claim it's going to destroy publishing.

These are the books piled on an antique tea chest on the floor next to the bed. They are stacked two deep and up.

The dining room has books.

Books on the floor behind the chair --

Books in the living room

I'm looking rather contemplative in my late twenties, looking down on more books.

Books piled next to the fireplace

Another pile

Hallway bookshelf

The boys' room has busting at the seams bookshelves. I just can't get rid of them. I can't.

My favorite two shelves of poetry books -- and my 1982 NCAA Basketball Championship bottle of Coca-Cola (go Heels!).

I wish that I had a library and all my books would be in there. I just spent an inordinate amount of time googling home library images to post here, but there wasn't anything enticing. I basically want three walls of books, ceiling to floor with a ladder for the highest shelves. A dark red patterned Oriental rug covers the floor and there are two or three large reading chairs, one of which (mine) is placed before the bay windows that either look out on green trees or the ocean. I can't decide. The light, though, is warm and it's NOT cold outside.

Tuesday, December 15, 2009

What I say when my kids ask whether I believe in Santa Claus

 is I believe in magic...

Now it appears that science is on my side as well.

Here's an excerpt of NPR's review of Gregory Mone's book The Truth About Santa: Wormholes, Robots and What Really Happens on Christmas Eve.

Getting presents to all the good little boys and girls every Christmas is a monumental task for Santa Claus — and it's led some children to question how he does it.
In The Truth About Santa: Wormholes, Robots and What Really Happens on Christmas Eve, author Gregory Mone explains the elaborate systems that make it all possible.
"I think part of the reason people look at Santa and say it's all magic, is that his job does seem impossible, this notion of getting around the world and visiting all these homes in a single night," Mone, an editor at Popular Science magazine, tells NPR's Renee Montagne.
But Santa's secret, Mone says, is that he uses tools that are hundreds of years beyond what we have at our disposal.
"As a result, it does seem like magic," he says. "But it's really all science and technology."
For instance, Santa's red suit: It's designed for the extreme conditions he encounters while traveling at warp speed and bending space and time. And, Mone says, "Santa's suit is laden with what are called metamaterials, which have the effect of bending light around a person so that they turn invisible" — which can come in handy if there are curious children peeking during his Christmas deliveries.
Santa's reading glasses, which contribute to his quaint image, are actually equipped with what's called a "heads-up display." When Santa looks through the lenses, he sees a range of information about the residents of the house he's visiting, the presents to leave, directions to the next house and more.
He also has a special device to ensure he doesn't double up on presents under the tree.
"Santa knows what we want, but he doesn't really know what presents to leave for a given kid until he gets to the house and looks under the tree," Mone says.
But Santa doesn't have time to unwrap and rewrap all the presents. So he uses a terahertz wave radiation scanner to see through the wrapping and make out the shape inside, indicating which toys are already under the tree. That way, he can leave a different one.
The latest research in the social sciences has also had an effect on Santa's operations. Mrs. Claus, who's particularly fond of the works of Harvard University child psychiatrist Robert Coles, convinced Santa that positive reinforcement would be more powerful in altering the behavior of "naughty" children.
Because of this, Santa no longer leaves coal in their stockings.

And here's your wack-a-doodle Carol of the Day:

Monday, December 14, 2009

What Matters Now - a Diversion from a Carol a Day

I heard it from The Improvised Life, a blog I've grown to love. You can download a very cool, inspirational e-book HERE.

The book's creator, Seth Godin, has compiled the work of over seventy writers and artists and thinkers under the title What Matters Now. He hopes to put it into the hands of five million people, and I guess I'm one. So carry on, if you feel like it. It sounds pretty cool to me!

Turn up the volume for this one

The Soweto Gospel Choir singing Christmas

What do you think?

I've pared down and simplified, but I'm not entirely sure that I should go this simple. I'd love your comments and advice.

Sunday, December 13, 2009


I'm trying to change my blog and I can't seem to figure out how to remove the skinny or wrap or whatever it's called on the sides. Does anyone know how to do this?

I Don't Miss Snow

The thing is Los Angeles does have season changes. It's cold out here right now, relatively speaking, and we had some soaking rain all day yesterday and Friday. The air was crisp and clear today, after the rain, and the mountains ringing the city (mountains that are often covered by haze so when they appear it's like a miracle, like someone put them there overnight!) are tipped in snow. The palm trees in the foreground and the blue of the sky with those snow-tipped peaks are astounding in their sharpness and give me a sense of exhilaration. I live HERE, I think!

Dust of Snow
The way a crow
Shook down on me
The dust of snow
From a hemlock tree

Has given my heart
A change of mood
And saved some part
Of a day I had rued.
             --Robert Frost

Some Bright Morning

I have a sort of modern-day, virtual pen pal named Andrea who sends me bits of wisdom and witty conversation almost every day. She sent me this yesterday and while neither of us know who Robert Brault is, we both like his thinking. Thank you, Andrea!

Toss your dashed hopes not into a trash bin but into a drawer where you are likely to rummage some bright morning...
-- Robert Brault

And this isn't really a CAROL, but it sure is good and I just can't resist:

Saturday, December 12, 2009

Bob Dylan's Carol of the Day

I was skeptical when I bought the new Christmas album, despite my steadfast loyalty to the man. But I actually like it, and I really love this song and video:

Friday, December 11, 2009

Two Conversations and a Christmas Poem

The Descent of Peace - William Blake

The scene is the dinner table, and for once we're all there. The Husband is home from work because he had a lumbar puncture today (and I'd add that yes, it takes a lumbar puncture and an order to take it easy for The Husband to be at home during the dinner time) (and that's a whole other story that only lends a bit of drama to the scene and one that I just don't feel like writing about). We're eating roast pork with cranberries, wild rice and sauteed green beans. Sophie has had a good day with few seizures and is active, meaning she's reaching for things, trying to feed herself, touching The Husband's face as he feeds her.

Oliver who is refusing to eat as usual (he basically subsists on  minimal protein and air) asks Is Sophie going to live with you guys forever?

The Husband says That's right and I say Well, maybe not forever. Maybe she'll live with some friends in a group home. Like a kind of college dorm.

Oliver says I mean, will we have to take care of her when you're dead?

Henry looks up from his food and joins the conversation.

No, dummy. There will be someone to take care of her. Right, Mom? And we can visit her?

Frankly, I don't want to go into it, again. So I reassure them that Sophie will always have someone to help take care of her and then the Husband, being Swiss and oh so subtly different culturally tells the boys you might not literally take care of her but you'll visit her all the time when we're gone, right, because everyone has to die after all. (This in the Swiss-German accent, neat and matter-of-fact, clean and it's why I married him, folks 'cause you know me...).

And then the conversation comes to a halt and I quickly fill the void with the inane. You know what, everyone? When Mommy and Daddy are 100 years old, Sophie will be seventy and you guys will be in your sixties and we'll all be together. How's that? Eat something, please, Oliver.

I can only take so much and clearly this will be an ongoing conversation.

Later, I sit on the couch next to Henry who is dressed in skinny jeans, a tee-shirt and a knit cap with the letters USC on them (ugh!). He is playing with his DS, some silly video game and he looks impossibly cool and hip, something I NEVER was as an eleven year old.

Does it make you nervous when we talk about taking care of Sophie, Henry? I ask.

Nope, he says, still pushing the buttons of his game. I can take care of her.

If you had two wishes what would you wish for? I ask, basically a sucker for punishment at this point.

First that Sophie would have no more seizures and be normal. And then I'd wish for a Ferrari.

And now, instead of a carol, I'm posting a Christmas poem by Emily Dickinson:

The Savior Must Have Been a Docile Gentleman

The Savior must have been
A docile Gentleman -
To come so far so cold a Day
For little Fellowmen -

The Road to Bethlehem
Since He and I were Boys
Was leveled, but for that 'twould be
A rugged Billion Miles -

Wednesday, December 9, 2009

Bluesy Carol of the Day


I haven't written one of my crazy, being the mother of a kid with special needs kind of posts in a while, but don't think that each and every day doesn't have its treasures. And I'm being a bit sarcastic, here, but above all, honest. So, this afternoon was a day that warmed my heart because when Sophie came home from school, a girl who just moved in around the corner called and said that she wanted to come over and visit Sophie. I've known this girl and her mother and sister for years, but they only recently moved into my neighborhood. Let me back up and say that other than the children who go to school with her, Sophie has no real friends. This social isolation is not something that I've neglected or something quickly re mediated if I only worked on it -- I believe that it's a common problem for those of us with nonverbal children who also have pretty severe developmental and cognitive disabilities. It's the biggest heart breaker of all, actually, greater maybe than the dozens of seizures a day or the relentless grind of diapering, feeding, bathing and dressing an adolescent. When I do think of it, I push it to the back of my mind so as not to overwhelm my heart.

But I digress.

This neighborhood girl -- Janie -- has taken a liking to Sophie in what I would call a true, nurturing sense. She is a quirky girl, dramatic and precocious and open. She is matter of fact with Sophie: she says Hello! and remarks on what Sophie might be wearing. She talks TO Sophie, rather than ABOUT her. When I told her that Sophie has so few friends and how grateful I was that she was visiting, Janie said, Well, Sophie, I am your friend! And she sat down on the floor next to her and picked up the various toys that Sophie likes to manipulate and mouth and played with her, chattering on like girls do. I stood in the doorway, in awe, with tears in my eyes. And then I went to get the camera.

Like I said, my heart was warmed and my tears ran fast and all was good as I hummed at the stove, making grilled cheese sandwiches with pears and garlic french fries while my daughter and her friend, HER FRIEND!!!, were playing in her room.

At some point, The Husband came home early so that I could leave and go to a school meeting for Henry (the child who will soon be in middle school, my God!) and while I was explaining that my grilled cheese sandwiches with pear were almost done and don't forget to give Sophie her medicine and Janie is here and she is visiting and playing with Sophie! and then Janie walked down the hall to say hello to The Husband and while they were chatting and I was wrapping a scarf around my neck since it's getting cold out here in LaLa Land, I heard a small cry, a choked cry that didn't sound like a seizure cry but it sounded like something, so I ran back to Sophie's room and found her, head bowed, standing right by the door. And when I tried to open the door, a door that is cut off halfway so that we can keep it closed and her inside but still see her, well, her head was bowed and she was making these strange cries because a chunk of her hair was wrapped around the little old-fashioned lock at the top of the door. Sophie doesn't use her hands and I'm sure had twisted and turned and bobbed her head until the hair was really stuck and it took me a stifled frenzied moment to untangle it and her from the door, but when I did I realized

the potential.

What if she'd had a seizure and fallen? Her hair, maybe her whole scalp would have come off! I said, almost hysterically, to The Husband while Janie looked on saucer-eyed.

She might have been scalped! I cried.

But she wasn't, the Husband said.

And I know he's right. Except that I'm convinced the things I worry about are not the things that happen. If something bad happens, it's going to surprise me. And if something good happens, that surprises me, too.

Sophie made a new friend today and she almost got scalped.

Tuesday, December 8, 2009

Car talk, or where it's evident that my children have no sense of the value of money

1962 Ferrari 330 TRI/LM Testa Rossa went under the hammer for £4.6 million at an auction in Italy

Henry: When I'm old enough and have a lot of money, I'm going to get a Ferrari.

Oliver: You can't get a Ferrari; it costs about a million dollars.

Henry: Mom, how much does a Ferrari cost?

Me: Um, I'm not sure but I think it costs a couple of hundred thousand dollars.

Henry: Whoa. Then if I can't get that, I'll get a Porsche.

Angels and archangels may have gathered there

Some hate him, some love him. I love him. And I love this sad and melancholy song.

Monday, December 7, 2009

Another Giveaway

A friend of mine has taken it upon herself to begin writing, illustrating, photographing and even publishing some very cool children's books. The first one is now out and available at Amazon. The writer's name is Megan Hirsch and you can see her website HERE. The first book in the series is called How to Hold a Pencil, and it's a wonderfully designed, fun little book that I feel certain young children will enjoy. I also imagine children with developmental disabilities, autism and/or fine motor issues might benefit from this book. Megan plans on doing a whole series, and I look forward to each one!

I have one copy to give away, so please leave a comment if you'd like it, and I will pick a name randomly on Friday, December 11th.

Waiting and the Miscellaneous and the Carol of the Day

I clicked over to Deb's blog Talk at the Table and was overwhelmed. Each day of this month, through the Feast of Epiphany on January 6th, she is sharing a journey of intentional Hope for Advent. Look for this star if you click over to her blog. 

As I go through my day today, and hopefully onward, I hope to incorporate some of the things she is doing and suggesting in an attempt to shape and feel and keep the true meaning of Christmas and this season. I hope that you might as well.

On my way to the boys' school this morning, it was raining! Raining! Finally, it's raining, a beautiful, soft and gray rain. For those of you who live in rainy climes, I know this is nothing to get excited about, but for those of us who live in the perpetual 70 degrees and sunny, well, we lift up our faces and let it wash down. I had to be at the boys' school early this morning. As room parent for Oliver, my third grader's class, I had to collect a single flower and handmade card that each student was bringing in to celebrate the teacher aide's birthday. I brought along a vase, and while we scurried through the rain to the school, Oliver held it out in front of him, his yellow daisies he'd picked from our garden bobbing. He had his hood up and I walked just behind him, but close enough to see his upturned profile. I wish that I had taken a picture such was his simple happiness. His mouth was upturned in a huge smile and his arms with the vase of flowers reached straight out into the rain.

What are you doing, Oliver? Henry asked in a big-brother, scornful way.

I'm catching the rain! It's so good for the flowers! Oliver cried out. And something about his profile, his two big front teeth smiling, those outstretched arms and the vase of golden flowers made me want to cry out in gratitude.

For the Carol of the Day, I'll post Away in a Manger, sung by Alison Krauss and Mindy Smith. It sounds childlike to me, in keeping with my morning and my memory of singing this song with my preschool class in a pageant long ago.

Sunday, December 6, 2009


50,000 King Penguins
Without even realizing it, my blog hit the 50,000 hit mark this week. I just can't believe that within one year, that many people pushed the button and clicked on my little blog. It seems fitting during this waiting period of advent to express my thanks for all the support I've gotten this past year from each of you. Blogging is one part addiction but three parts grace. I mean that. While it has consumed me, periodically, it has also given me new friends, new ideas, spiritual support, encouragement, laughter and even literal gifts.

My community has expanded tenfold and I can honestly say that above all, the isolation I felt in that very special world of raising a child with disabilities is completely gone. Completely! Can you even begin to understand how profound that is?

Writing almost daily in this blog has also sparked that deepest, most essential creative spirit within. I feel as if the muscle, so necessary to exercise in order to write, has grown stronger, more limber, more expressive.

And while writing is also a necessity to me, something that I'd do lonely and cooped up in my room, in front of this screen, having you as the "audience" has been invaluable. Thank you.

And now, before I really start to wax silly, I'll sign off with today's Carol of the Day. I went to an Episcopal prep school and every Christmas the choir did Lessons and Carols. The first carol always began with one soprano in the back of the darkened church singing this. It still sends chills up my spine.

Saturday, December 5, 2009

Sing It

Just in case you're new to my blog, I'm posting a Carol a Day through the month of December.

Friday, December 4, 2009

The Christmas Blues


The morning dawns not with the sun but with the steady, dull blink of the blue alarm clock.

Your hair looks funny, he says, digging his two front teeth into an orange wedge.

They're here! he shouts when the guy who drives the carpool pulls up.

He scrambles to unwrap a chocolate kiss from the advent calendar while pushing his folder into his bag.

They run out the door yelling good-bye!

I sit with her in her room as she goes over, once, twice, three, seventy-five times, the same thing over and over each morning not like a blink but more like the sunrise, inexorable in its regularity.

When I can't look anymore, when my patience wears thin and I would rather push the day back and down back into darkness I rise and walk away from her and through the house, stepping over the trail and detritus of normalcy. The tiny playmobil sword, the errant sock in the doorway, the plastic boxers askew on the dining room table, exhausted from the bout, the air they breathe.


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