Gus and Izzy

A sweet little boy in the fourth grade who lives in our community is very sick. Please pray for him, send him healing thoughts, acknowledge the abundance of the universe for Gus.

My dear friend Erika of The flight of our Hummingbird has a little girl, Izzy, who is also struggling but with persistent seizures. She is in the hospital fighting them. I hope you'll send good thoughts and healing prayers her way, too.

To Gus and Izzy and their beautiful families

May the long time sun shine upon you

May all love surround you

And the clear light within you

Guide you on.

-- Irish Blessing

Yosemite - Part 2

Holiness comes wrapped in the ordinary. There are burning bushes all around you. Every tree is full of angels. Hidden beauty is waiting in every crumb.

Macrina Wiederkehr, O.S.B.

via Word for the Day

Yosemite - Part 1

I have so many photos and so much to tell you about my trip to Yosemite that I'm going to break it up into parts. That way it won't be like the endless slide show you might have been subjected to as a child or even adult, if you're as old as I am. Which brings me to the fact that I didn't announce my birthday either, which was on the 27th. I'm a big one for birthdays, welcoming all greetings, presents and treating me like a queen for a day (which seems to happen less and less in this my 48th year).

We've been coming to Yosemite every other year for the past eight years or so with my good friend Cara and her two daughters. The four children get along perfectly, and Cara and I "travel" well together -- we call ourselves the Marmots.

Here's a picture of a lamp, one of many that hang in the dining room at the Wawona Hotel, where we stayed. It's not just any lamp, though, as it's completely fabulous and has been there since the early part of the last century.

Here's the beautiful dining room where we sat every morning and every evening.

Here's a great shot of the Wawona, shining in the sun. The Lodge has been in existence since the early part of the last century -- maybe even before that -- the late 1800s, actually. It's very low-key, very rustic. The rooms are quite reasonable -- most don't have bathrooms, so you share.

Here's what's called The Annex, where we've stayed four times in the last eight years. The tables set out on the lawn were put there in preparation for the Saturday night barbecue.

We sit on these wide porches outside our rooms for hours, reading, playing Sorry and Scrabble and Yahtzee:

When it gets really hot, we refresh ourselves in what's fondly called The Tank, a rectangular pool built in 1913. The water is very, very cold. People wore more clothes back then.

The Wawona sits just inside the national park grounds. One morning we drove down into the valley, a forty-five minute, breathtaking ride. Here's a rare photo of yours truly, looking out over the valley, El Capitan and Half Dome:

Here we are, rafting down the Merced -- an experience that we'd never had before this summer -- and it was spectacular.

This stunning boy is my son.

Oliver proved to be an intrepid rafter -- completely in control and in charge. He also talked -- A LOT -- as we made our way down the Merced

Here's a shot of Bridal Veil -- a spectacular waterfall, given its name because of the effects of the water shooting off the rocks.

When we're not sitting on those Adirondack chairs, playing games and reading, we generally are down atthe creek that runs near the hotel -- I think it's part of the Merced -- or around the corner at the swinging bridge. The kids wade around, float on rafts and dive into the cold, clear as glass water.

Here's my birthday shot. I wore a Birthday Girl crown and received some wonderful presents from Cara and her daughters, our traveling companions.

It's time for a break, I believe. But I'd love to remind you to visit my "review" blog where you enter a giveaway to win a $100 gift card to Dick's Sporting Goods as well as learn a little about a nifty new project that Gatorade has going.

A Teaser

Black bear, Yosemite Park

I'm back from Yosemite with loads to share -- photos, black bears, my birthday -- but am going to tease you instead with a review/sponsored thingamajig that I'm doing through BlogHer.

Head on over to my new Review blog, if you're so inclined -- you can read it over there and enter to win a gift card to Dick's Sporting Goods.

There will be more on Yosemite tomorrow!

Yosemite

This grand show is eternal. It is always sunrise somewhere; the dew is never all dried at once; a shower is forever falling; vapor is ever rising. Eternal sunrise, eternal sunset, eternal dawn and gloaming, on sea and continents and islands, each in its turn, as the round earth rolls. 

-John Muir, naturalist, explorer, and writer (1838-1914) 

Off to Yosemite

The boys and I are off to one of the most beautiful places on Earth. It's certainly one of our favorites, and we are grateful to go every other year or so with our friends. We'll have no internet access for a few days, so if I don't visit your blogs, you'll know why.

How We Do It -- Part I in an ongoing series

I've been immersed in the world of disability for over sixteen years, and while I feel old and ugly and slightly bitter and very, very edgy, I also feel confident, empowered and intolerant of bullshit. When you've watched tens of thousands of seizures, maneuvered a seizing child down a hallway in your arms, changed an adolescent's dirty diaper in an airplane bathroom (said adolescent standing between your own legs as you sit on the toilet), slept with an adolescent every single night in fear of/anticipation of the seizure that will cause her to stop breathing -- well -- the list goes on and on, you've pretty much figured out how to do the daily life stuff and you might even be a bit RIGID about your routines.

Sophie is out of school until after Labor Day, so she's hanging out -- all day -- with me and the boys. It's tempting to just stay at home all day because that's easiest and probably most comfortable for Sophie. Aside from the big trips to the beach and museums, the trips that you can plan for, pack the wheelchair, the diaper bag, the sippy cup of juice, the handkerchiefs for drool, the little errands are the ones that often seem insurmountable. It's a pain to fold up Sophie's wheelchair for a trip to the grocery store or a quick trip into the bank or the dry cleaner or any of the myriad errands I run on any given day. A typical child can come along for the ride, either stay in the car or traipse in and out with me. Even when the boys were babies it wasn't that difficult to hoist them on my hip and do my thing.

I had to get out and do a bunch of errands today and literally begged Henry to go along with me and Sophie. I needed him to sit in the car with her while I ran in and out, so I bribed him with a promise of lunch and we headed off to the cooking and bakeware store that also has a cafe. I didn't pack Sophie's wheelchair because I didn't feel like it, and I knew that a handicapped parking space was right in front of the store so if I needed to, I could leave Sophie in the car with the window open.

Cause that's how we do it.

When we got to the store, I helped Sophie out and then walked awkwardly through it with her and Henry. While he held the things I picked out -- cake boxes, a bottle of hard cider for The Husband, cannoli shells and a pastry bag -- I held Sophie's arm and simultaneously kept her from sitting down on the floor as we waited in line to purchase our things. Sophie began to hum and moan -- loudly -- and Henry raised his eyebrows at me and said, under his breath , Soph, come on, shhhh and so did I. I let her sit on the floor for a minute, her long gangly body with legs crossed at my feet, and used my legs to shield her head from hitting the side of the check-out counter, deflecting, at least in my mind the stares of the other people in line. Then I signed my credit slip, handed the bag to Henry and helped Sophie up to standing and then out the door, all the while pretending that her constant hum was completely and utterly not affecting me and I was in fact oblivious to it.


When I put her in the car, in the seat behind the driver because she throws her head to the right and that way she won't hit it on the window, I felt relief. I straightened my back and rolled my neck and unclenched my hands. I also told Henry to go inside the cafe and decide what he wanted. He would then come out and I would go in and order our food while he sat in the car with Sophie. When lunch was ready, I would bring it out to the car and sit in the backseat with Sophie to feed her. As we eat our lunches from our handicapped spot, we watch the people coming and going into the cafe, sitting outside on the patio, kids rocking back on their chairs, chairs scraping on the concrete. When Sophie is finished and I've eaten, I'll go back in the front seat and we can go. And if Henry isn't with me, I'll go inside myself, leave Sophie in her seat with the windows open. She is visible through the plate glass window and I always hope that people will see her and assume she's old enough to be alone in the car.

That's the way we do it.

Later, when Sophie has been dropped back off at home with the babysitter, Henry goes out with me to finish our errands.

He asks me, Do you think our lives would be better if Sophie were normal? 

I tell him that our lives would certainly be easier and then ramble into the musing about disability and unconditional love and how much we've learned and so on and so forth, until Henry interrupts me by saying that man, if Sophie were normal she'd probably hate me but at least she could drive.

Urban Cornfield

Venice Blvd. 

A Chip off the Old Block

Peach Crumble Squares

Last night, Oliver, Henry and I worked for The Husband and manned a small booth at The Taste of Larchmont, a fundraiser for Hope-Net, an organization that helps the hungry and homeless in Los Angeles.

Restaurant and food places from our "village" donated food and drink in an evening of music and conversation. People strolled from place to place, sampling the food of many merchants. I don't write often about The Husband's mistress -- The Larchmont Larder -- but if you're in the area, you should definitely check it out.

I tell you funny stories all the time about The Big O, but I don't think I've ever touched on his extraordinary capacity for work. At ten years of age, he is capable of setting up, cutting and serving food, and he does so in a dedicated, meticulous way. That he's a mini replica of The Husband is never more evident than when he helps out like last night.

Live from the Hollywood Bowl

Encore number at Fantasia - Hollywood Bowl, August 21, 2011

I was invited last night to attend a concert at the Hollywood Bowl, one of the most beautiful spots in Los Angeles, if not the country. The mountains ring the arena, and the ridge line over the top always reminds me of something from a Fellini film -- I almost expect a line of singing and dancing people to rise up over it and toward us. As the sun sets, the air gets cooler and cooler until you need to put a sweater on, and when the music begins it feels as if you've left one of the country's largest cities for some kind of alternate universe. The Hollywood Bowl Orchestra played music along with the old movie Fantasia, which had been beautifully restored. I confess that when my friend invited me, I wasn't excited. I'm not that into Fantasia. Can I tell you that the night was fantastic? Not only was the food delicious -- we sat in a little box and ate Caesar salad, tomato salad, smoked salmon salad and whoopie pies -- but the music, live, alongside the beautiful images was magical. The conductor led us through the history of Walt Disney's work on the movie and the incredible amount of artistry that was required pre-computer animation. He also showed a short film that Disney collaborated on with Salvador Dali that combined the sensibilities of the two artists -- at the end of it, the four of us sat with our mouths open. The music alone was worth the entire night:

Other People's Stuff

Remember last week when my boys donned masks to clean out their room? We did a terrific and satisfying purge of all the crap they'd squirreled away for years. We boxed up Legos, threw away ancient McDonald's Happy Meal toys, cleared away baby board books and otherwise made the place swanky.

When I left on Thursday for my trip to D.C., the room looked fantastic.

Evidently, while I was gone, the neighbors down the street who are getting a divorce and moving, opened their house up as a sort of boys' rummage sale. Except it wasn't a sale, and everything was free. When I finally arrived this afternoon after a two day odyssey whose origins are still unclear (mechanical failure? storms in Chicago?), I was greeted by The Big O's new acquisitions.

A plastic Target bag filled with old magic trick shit

 A broken box of faux Tinkertoys

My bed covered in paper cocktail parasols

Oliver's chest covered in enormous trophies for Chess and sports that Oliver doesn't play

and a six-foot deflated plastic palm tree

It made me sort of want to cry, but perhaps it's because I was stuck in DC with the LA blues again and now have to hit the ground running. Or maybe it's just bourgeois complaining --

Sunday Koans and the moon

The master Ryokan lived in a poor little hut on a mountainside. One moonlit night he came home and found a burglar looking for something to steal. But Ryokan was a hermit who owned nothing.

Poor fellow, he said to the robber. You have come a long way and found nothing. But I don't want you to leave me empty-handed. Please take my clothes. And Ryokan stripped, and handed the clothes to the robber.

Poor fellow, said naked Ryokan, going outdoors again when the inconsiderate robber had left, How I wish I could have given him this wonderful moon.

-- from Zen Buddhism, An Introduction to Zen with Stories, Parables and Koan Riddles Told by the Zen Masters, The Peter Pauper Press

I'm tempted to never travel again

Stuck inside of DC with the LA blues again --

Get me out of here

I am stuck in the Washington Dulles airport for four hours. The name of the above pictured store is AMERICA and is staffed by a polite, young Indian man. I think I'm going to have to assuage my anxiety with a Wetzel Pretzel dog. Then I'll finish the Michelle Bachmann article I'm reading in the New Yorker over drinks in the airport bar. Multiple ones.

The Eighth Wonder of the World

Sophie's Hair, After a Bath

When she was a baby, I prayed that her hair would stay curly not frizzy and that her seizures would stop.

Hmmmmmm.

Thing

German thing, in a relief of a column of Marcus Aurelius (AD 193)

I'm off to Washington D.C. to attend an advisory council for Project Access, a consortium trying to improve the lives of children with epilepsy and their families.  All week, I've been reminding my friends and family that I'm going to That Thing, and I was suddenly reminded of a trilogy of books I read more than twenty years ago by Sigrid Undset, a female Norwegian Nobel Prize winner (1938). Kristin Lavransdatter was about life in Scandinavia in the Middle Ages, and I read the books avidly, one after the next.  I remember descriptions of The Thing -- a name that fascinated me and still does. The Thing was a governing assembly, made up of free people. You can read more about The Thing here. Interestingly, if you scroll down the wikipedia site, you'll see a modern Thing in Glarus, Switzerland -- the tiny canton where The Husband has his roots. When I called to him to come see, he exclaimed that he'd been there, right in the middle, there, voting. It appears that the Swiss have a much more direct version of democracy than we do in the United States.

It's their Thing, I guess. Our Thing is to throw as much money as possible at a candidate in the hope that more money will buy more influence. At least that's the kind of Thing going on today.

So, I'm going to That Thing for a couple of days. I hope to post, but I might very well be wrapped up in solving the epilepsy world's problems. And other things.

See you soon!

Communicamp

This is a photo of a boy's finger, attached to a line that activates a switch. This boy uses his brain, his remarkably damaged yet powerful brain to move his finger, to push the patch, to activate the switch and thus to communicate.

Powerful.

This tree, growing on the bluff that overlooks the Pacific, frames the area where Sophie and her fellow campers eat lunch with their teachers and aides each day of Communicamp. It reminds me of a passage from one of my favorite books, Changed by a Child, by Barbara Gil:

A relentless southwest wind blows in the Laramie Range of Wyoming. It has blown for eons, scraping the mountains bare of soil, carving out the landscape. It causes trees to grow at an angle and lifts into the air things that ought to stay on the ground. It complicates all manner of human activity. People who live there successfully have reached an accomodation with the wind; some who couldn't, went insane.

Disability is a steady west wind in our lives. It permeates our existence, altering the topography of our days and causing our family and our life to grow at an angle. Without judging the wind as good or bad, we can observe the truth of it, acknowledge the force of it in our lives, and take the measure of our accommodation.

This is Millie, Sophie's aide who picks her up each morning and stays with her at camp, a woman who has worked in Sophie's classroom at her high school all year but who is surprised and thrilled at all Sophie can do at Communicamp. I am filled with gratitude for the loving care Millie has shown Sophie and for all that she's been open to learn. I hope that she will pass it along to Sophie's regular classroom teacher and aide.

Sophie is using the iPad as her main communication device, and the two teachers program it so that she can participate in the games and exercises that the entire group is engaged in doing. There is music and movement and laughter and smiling. When Henry, Oliver and I visited last week, we marveled at the kids and what they were accomplishing.

Sophie can't really use her hands effectively at all, can't point and certainly can't type. But she'll swipe at the iPad, and she is beginning to "get it."

Here, Oliver is participating in a game with Sophie. She is the conductor and swipes the picture of the instrument on her iPad. It's voice-activated, and Oliver must listen to what Sophie picks and then pick up and play that instrument. Sophie actually smiled during this, something that she does only rarely.

The group of students at Communicamp ranged in age and ability. None were verbal that I saw or heard, but all of them were working on some alternative means of communicating, using various devices like Big Macs, switches, computers and iPads. What happens when you see people like this, struggling to communicate, to express their wants and needs and answers to questions is a profound alteration in one's psyche. It's about nothing less than what it means to be human.

The camp is held at the Elk's Lodge in Redondo Beach. On their website, it says that The Benevolent and Protective Order of Elks Lodge 1378 offers community service and fellowship. I am filled with gratitude for this beautiful place, for the teachers of Communicamp, for the aides and for the new friends that Sophie has made.