Sophie and Henry

Do we look alike? Henry asked tonight.

Yes, I said, you look like brother and sister.

I'm glad she's my sister, he added, and I say prayers that her seizures will stop and maybe she'll talk.

Announcement

On Monday, June 1st, I am hosting my first guest blogger. Her name is Barbara Gail Techel and she is the author of a wonderful little book.

Here's a preview:

Frankie the Walk 'n Roll Dog Virtual Book Tour - June 2009

Frankie the Walk 'n Roll Dog, an Inspiring Story About Overcoming Adversity, Tours Cyberspace

In June 2009 - Barbara Techel will tour cyberspace to promote her multi-award winning picture book, Frankie the Walk 'n Roll Dog. This book tells the true story of her dachshund, Frankie, who was paralyzed by an injury. Frankie recovers, thrives, and keeps on rolling with the help of a custom-fitted wheelchair. Children love this book, and it resonates with dog lovers, families of kids with disabilities, and book lovers of all ages.

About Frankie the Walk 'n Roll Dog

Frankie is a dachshund, and this story is told from her point of view. She survives the normal challenges of puppyhood, including a struggle with house training, after Barbara and John adopt her. After a spinal injury, her human family nurtures her through a long period of rehabilitation and buys her a custom-fitted wheelchair. It takes a while to adapt to her new wheels, but soon she is joyfully rolling and playing.

Barbara wrote this book to offer hope and inspiration to people who face challenges. A lifelong animal lover, she realized Frankie's paralysis was an opportunity to spread a positive message.

Topics and Themes in Frankie the Walk and Roll Dog

• Teaching children and adults about compassion

• Helping readers learn to overcome adversity
  

• Providing encouragement to children with disabilities and their families
  

• Helping people see challenges as a way to learn and grow.
  

• 
  

• Showing animals with disabilities in a positive light
  

• Helping dachshund owners (and many vets) understand this disease in doxies and know that a wheelchair is a viable option

About Barbara Techel

Barbara is a writer and animal lover. Her column, "For the Love of Animals" has appeared in the Depot Dispatch. Frankie the Walk 'n Roll dog, her first children's book, was awarded the 2008 National Best Book Award (children’s picture book soft cover) by USA Book News, the Merial Human-Animal Bond Award by Dog Writer’s Association of America, and the Editor’s Choice Award by Allbooks Review. It was also a finalist in the 2008 Indie Excellence Awards. Frankie herself was inducted into the 2009 Wisconsin Pet Hall of Fame.


To see the tour schedule visit: http://virtualblogtour.blogspot.com/2009/05/frankie-walk-n-roll-dog-virtual-book.html

For more information see Barbara's site: http://www.joyfulpaws.com/

And her blog: http://www.joyfulpaws.com/

Highway Robbery

I've been so busy blogging about politics and blogging travel groups and everything else that I've left The Girl high and dry!

Sophie is doing much, much better. She is having far fewer seizures these days which I attribute to the now complete wean of the new drug that we tried that did not work. She's still having them (in fact, I heard an enormous thump tonight and when I ran to her room, she was lying on the floor, stiff and jerking, her head so close to the edge of the closet and baseboard that I had to run my hands all over it, certain that I'd pull them away sticky with blood.) But she was fine -- just having a seizure.

I'm feeling lighter and easier and so is she. I'm thinking it's GRACE, pure and simple, and I'm grateful for it. I'd like to say that I prayed for this feeling but I only prayed for help in a very desperate way, over and over, and I don't really actually believe that there's a God, that kind of God, anyway, that answers prayers. I imagine that will offend some people and I hope it doesn't offend those who are praying for me and for Sophie because I think those intentions are incredibly powerful and I hope that they continue. I don't really know WHAT I'm saying except that maybe I believe in the randomness of fate and I certainly believe that nothing is permanent and that everything changes. In fact, my favorite book of the Bible is Ecclesiastes and that's because it's all about vanity and nothing being new under the sun. And I believe that when I'm desperate or praying or meditating I'm also responsible for LISTENING and for feeling gratitude when it's due.

I'm grateful.

Anyway, this ramble was to give you an update. Things are pretty good right now. I'm leaving on Saturday for Arizona. I'm taking Sophie on an overnight trip to see a very famous homeopath who helped us tremendously about four years ago. The impending trip and the good that has come before appears to be divinely guided. I believe that and thank the Universe for it.



But now I have something funny to share. Bitingly, wickedly funny. At least to me. Remember my post about our abysmal wait at the big grand cathedral-like hospital? If you don't, you can click HERE and refresh yourself. Because today I opened a slim envelope from the insurance company and read the EXPLANATION OF BENEFITS. Here are said benefits from above-referenced hospital:

Service Date
5/07/09 - 5/08/09

Type of Service
Private Room (and this really makes me laugh with its implication of something requested, something special, something like a hotel service)

Total Billed
8,534.50

That's dollars. Oh, and fifty cents. And that's just the room rate and doesn't include the EEG tech, the EEG itself, the glue that the tech used and the chemical he used to take it off, the radiologist who read the EEG, the pediatrician and resident pediatrician, the neurologist and his team and god knows what else we charged in that five-star PRIVATE room that we waited seven hours for.

I think that calls for a JESUS CHRIST! despite my admonitions to my children to never utter the Lord's name in vain.

3 Minutes

I've just learned of a small boy who is battling, with his parents, a terrible cancer. We've all heard these stories, listened to the appeals and felt the heartbreak.

But this is a special story and a special post that I encourage you to read HERE.

Take three minutes of your day, each day, and think of Pablo. Imagine him one year away, ten years away, twenty years away, an old, happy man.

Imagine that

Pray for that

Meditate on that

for THREE MINUTES.

Corner View Wednesday

Some facts from Wikipedia:

Los Angeles (pronounced /lɒˈsændʒələs/ los-AN-jə-ləs; Spanish: [los ˈaŋxeles]) is the largest city in the state of California and the second largest in the United States.^[1] Often abbreviated as L.A. and nicknamed The City of Angels, Los Angeles has an estimated population of 3.8 million^[2] and spans over 498.3 square miles (1,290.6 km²) in Southern California. Additionally, the Los Angeles metropolitan area is home to nearly 12.9 million residents.^[3] Los Angeles is the seat of Los Angeles County, the most populated and one of the most diverse counties^[4] in the United States. Its inhabitants are known as "Angelenos" (/ændʒɨˈliːnoʊz/), or "Angelinos" when using the proper Spanish language spelling.

How do you show this cityscape, the theme of this week's Corner View? We have a typical downtown:


and given the haze, people often forget that the city sits in front of some pretty glorious mountains that are clearly visible on winter days:



And who doesn't love a view of the city from Hollywood?


And then there IS Hollywood:



And the cityscape includes tens of thousands of immigrants:

and downtown festivals for animals when pretty much everyone shows up:

Vintage signs (and the places that go with them) are ubiquitous:

And then there are the surfers -- a cityscape all their own:

Los Angeles gets a bad rap, but it's pretty fantastic. Never in my wildest dreams would I have believed that I would live here, much less love living here. But I do. I think New York City has my heart, but Los Angeles has my sanity. And there's something to that.

I'm rooted, too, by the fact that I have two little boys who will always claim that they're from southern California.

And that calls for a little music:

And don't forget to check out some more cityscapes here:

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,
caitlin, joyce, ani, 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, 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, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, vanessa, britta, virgina, april, rebecca, b, sunnymama, kyndale, samantha, karen, kristina, angelina, dorit, goldensunfamily, sophie, janet, nicki, ruth, mcgillicutty

Numbers

The boys and I walked down the street today in the little village near our house. We passed a guy who was asking for support to overturn Prop 8 (and if you're not a California resident or have been living under a rock, click here). He had his clipboard and his pen and an earnest, young face. I smiled kindly and told him that I supported the overturning of Prop 8 but that I didn't have any money that day to contribute. I thanked him for his work and we walked to the car.

"What's Prop 8, again?" Oliver asked, once we were in the car.

"Do you know, Henry?" I asked Henry. Henry just shrugged and said that he'd forgotten.

And so I explained to Oliver that men who loved men and women who loved women and wanted to get married to them weren't allowed to in California because of Prop 8. I told him that there were people in the state who believed it was morally wrong to love a person of the same sex in the same way that I loved their Dad. I told him that I thought it was not only a civil right to love whomever one chose and to marry whomever one chose but that it was also a human right and that I and Daddy both believed that. I told him that it doesn't matter whom you love and that I didn't understand why so many people would feel otherwise. I told him that I thought Prop 8 was wrong and that I supported taking it away because it denied equality and freedom to many people.

I finished up my mini speech and asked him, "Do you understand that?"

And he said, "Yeah. What is 16 + 16?"

And I said, "32."

And that was that.

Memorial Day

I always feel conflicted on these holidays -- the national ones where we're supposed to feel patriotic, full of honor, all those things. I have made no sacrifice for my country and have, actually, often despaired of my country. I struggle to feel the "right" way about soldiers and those who have died "for our country."

I do remember this poem, though, by Wilfred Owen. I remember reading it in high school from my white Norton Anthology. I remember feeling horrified. I remember wondering what sort of man Wilfred Owen might have been had he not died in a World War I battle when he was only 25.

Dulce et Decorum Est

Bent double, like old beggars under sacks,
Knock-kneed, coughing like hags, we cursed through sludge,
Till on the haunting flares we turned our backs
And towards our distant rest began to trudge.
Men marched asleep. Many had lost their boots
But limped on, blood-shod. All went lame; all blind;
Drunk with fatigue; deaf even to the hoots
Of tired, outstripped Five-Nines that dropped behind.

Gas!⁷ Gas! Quick, boys! – An ecstasy of fumbling,
Fitting the clumsy helmets just in time;
But someone still was yelling out and stumbling,
And flound'ring like a man in fire or lime . . .
Dim, through the misty panes and thick green light,
As under a green sea, I saw him drowning.
In all my dreams, before my helpless sight,
He plunges at me, guttering, choking, drowning.

If in some smothering dreams you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil's sick of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene as cancer, bitter as the cud
Of vile, incurable sores on innocent tongues,
My friend, you would not tell with such high zest
To children ardent for some desperate glory,
The old Lie; Dulce et Decorum est
Pro patria mori.

Sanctuary

The world is small in so many ways. I've met a wonderful blogger who has a daughter named Sophie, and along with struggling with our two Sophies' disabilities, we share a dream of a school for them -- a place of learning and health and beauty and completely out-of-the-box philosophy. My friend has started a website to explore this dream and perhaps, even, to build upon it.

Click HERE to make the world even smaller.

Barfly

I took the kids over to the Farmers' Market tonight to meet a whole bunch of friends and celebrate E's birthday. We sat around tables that we pulled together, drank wheat beer with orange slices and ate food from one of the best Mexican spots around. We laughed a lot and tried to manage the kids who were all running around and into and out of the market stalls. Oh, well...

I brought Sophie along tonight as well and she did pretty well in her stroller despite the noise and mayhem. She only had one small seizure that I missed when I got up to get Oliver some food. By the end of the second hour, though, she was growing increasingly agitated and I knew it was time to leave. It's hard to sit for that long in that crowded of a space. The bar next to us was growing rowdier by the second as the people crowded round a television showing the Lakers game. I had to push through the crowd to ask the bartender to validate my parking ticket, and when I did, a guy sitting on the barstool said,

Why don't you sit down and have a drink with me?

Because I was sort of pushed up against him, I felt his almost square body and was on eye level with a few gold chains hanging around his neck. He had beady little eyes in a red face and wore a straw cowboy hat.

His invitation struck me as hilarious, though, and I nodded over to my "crew": a handicapped child in a wheelchair, a small boy with chocolate smeared around his mouth and a big boy with sweaty hair and dirty jeans.

Trust me, I said, with a smile, You don't want to have a drink with me.

Hopeful Parents

I'm over at Hopeful Parents today.

Check it out HERE.

The Unbalanced

In our house, there are several words and expressions that are considered "bad." These include:

1. Stupid
2. Shut up
3. Taking the Lord's name in vain or the big bad curse words.

I've restrained myself the last few days and ordinarily don't want to make politics a part of my blog, but I just can't resist.

Today, I unfolded the paper to a HUGE photo of Dick Cheney on the cover, right next to the President.

This is what I want to say:

SHUT UP YOU STUPID SOB!

And now, for some more coherence on the matter, you can read this by clicking HERE!, written by an extraordinary, relatively politically conservative writer.

The Old Gray Mare

After weeks or maybe months (o.k., years), I'm feeling a teeny, tiny bit more calm these days. Mellow. I haven't cried after a bout of Sophie's morning seizures for a week or so and I'm able to almost detach from my usual feelings of desperation and lovingly tend to her during those seizures. Perhaps this is from the meditation work that I've been doing or the inclining my thoughts, my breath, my being toward meditation, to prayer. Perhaps it's the tiny little OM sound machine that I've started turning on as Sophie has her bouts -- I push the button OCEAN SURF and listen to it with Sophie, quietly whispering to her that I'm here, you're fine, it's all right, breathe. Perhaps there's been a type of surrender (and I'm cognizant of the fact that nothing stays the same and I might be a Ellen Burstyn in Requiem for a Dream lady, again, at any time).

I'm not really sure, though, because I made myself laugh yesterday on the phone with my friend S when I told her that I might also just be like a broken horse.

The old gray mare.

She ain't what she used to be. She ain't what she used to be Ain't what she used to be. The old gray mare, she ain't what she used to be Many long years ago.

Corner View Wednesday, Los Angeles, CA

This is the coffee that my husband brought home the other day from his store. One of Bob Marley's sons is selling it. The Husband said that the son is middle-aged but bore a striking resemblance to Bob, hair and all. The coffee is very mellow, just as you'd imagine.

On the back of the bag, and you have to look really, really hard, is a print of a tiny little leaf. Guess what kind?



Check out the other Corner View posts with the theme of Coffee:

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,

caitlin, joyce, ani, 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, 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, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, vanessa, britta, virgina, april, rebecca, b, sunnymama, kyndale, samantha, karen, kristina, angelina, dorit, goldensunfamily, sophie, janet, nicki, ruth, mcgillicutty

Jacaranda Tree

It's jacaranda blooming time here in southern California. This is the kind of tree that just about appears overnight, its purplish blooms erupting against green leaves and blue sky.

There's one across the street from us that is just CRAZY beautiful.

Plant Details

Common Name: Jacaranda

Botanical Name: Jacaranda Mimosifolia. The species name mimosifoloia refers to the foliage, which resembles that of the mimosa or wattle tree.

Jacaranda grow around 10-15m (30-45ft) tall and have lacy green foliage which turns yellow in autumn before falling. The trumpet-shaped flowers appear before the leaves return, then drop to form a blue carpet undeneath the tree. The colour of the flowers varies from soft blue through to mauve-blue and almost purple.

Go Among Trees and Sit Still

I go among trees and sit still.
All my stirring becomes quiet
Around me like circles on water.
My tasks lie in their places
Where I left them, asleep like cattle…

Then what I am afraid of comes.
I live for a while in its sight.
What I fear in it leaves it,
And the fear of it leaves me.
It sings, and I hear its song.

By Wendell Berry from Sabbaths, 1987, North Point Press

Talk About It

Check out this great new website:

Talk About It

The Beauty of the Blog

Henry was in bed just now, reading, and he came out of his room and said, "I feel sick to my stomach." I asked him whether he had to throw up and he said he didn't know and then he went into my bathroom and I sat down here at the computer to read Frank Rich.

And then there was an earthquake. The big, halting, jolting kind. Seconds of shaking when you feel it and question it and deny it and know it.

Henry came out of the bathroom and calmly asked me whether he needed to go get under a table. I stood up and moved toward Sophie's room where I sat, on the edge of her bed, my heart pounding. Henry came with me.

I hate earthquakes and haven't felt one in a really long time.

Henry said that he felt better and could he go back to bed. So he did.

And now I'm here, my heart still pounding wondering how it ever happened that I gave birth to a boy from Southern California. Actually, two of them. Oliver is sleeping soundly next to his quivering cowboy nightlight.

One Thought Leads to Another

I've been struggling of late to write a post about how worked up so many people get in regard to their kids' education. I probably have at least one conversation every single day with someone who is worried, kvetching, complaining, bragging or something or other about their son or daughter's school. Frankly, I'm tired of it. I want to SCREAM:

"IT"S FOURTH GRADE PEOPLE!"

I want to scream other things as well, but I don't. About entitlement and over-parenting and just what do you really remember about elementary school and how is that carried on into your life at present? I actually loved my fourth grade year. In fact, I loved it so much that "four" became my favorite number. I had Mrs. Delp (four letters); our class was Room 4. I tried out and won the role of Dorothy in The Wizard of OZ in the school play. And while I remember that I sort of had a crush on a kid named Billy Hall and I was in awe of a girl named Julie Devin, who lived with her hippie mother in an incense infused apartment, and another girl named Shawna Gidwani was a real live immigrant from India, I don't really remember much about what I was actually doing all day. And I doubt my mother does either. I doubt she thought about it much then, either.

My husband, who grew up in Switzerland and walked to school barefoot in the summer with about six other kids from his village, doesn't "get" anything about Americans of a certain socioeconomic class -- about their insatiable need to know everything about the school's educational philosophy. He only raises his eyebrows when either boy is stumped on something really, really basic.

"What do they teach in American schools, anyhow?" he'll say. And I won't go into his reaction when I tell him that we have traffic duty or some other inane volunteer responsibility. Suffice it to say that chefs, by nature, use very foul language.

I admit to worrying and complaining myself, sometimes in commiseration and other times because the pull is just so irresistible. Half the time I'm thinking, am I missing something or do I just not care? But I'm trying NOT to get sucked into it all. I really do think that "everything's going to be all right" with our kids. I guess I can only speak for myself, but down deep I just don't lose any sleep over it. Basically, I want them to learn and have fun, have time to relax when they get home or run wildly. Whichever, whatever.

Can't there be something in my life that isn't thought about ad nauseum?

Really, I wish everyone would just RELAX.



I suppose I need to take my own advice because this is what I'm thinking about (and maybe you think I should give it a rest?):

If you haven't noticed, you need to now. Epilepsy is getting more and more coverage and visibility. Thanks, mainly, to David Axelrod, one of President Obama's chief strategists. He and his wife Susan have a young adult daughter who has had epilepsy her entire life. Many years ago, Susan started CURE, a non-profit organization that raises money for medical research.

Recently, the two were featured in Newsweek and Parade magazines.

And today they appeared HERE:

Visit msnbc.com for Breaking News, World News, and News about the Economy

I was struck, especially, with the discussion of the social loneliness of children with special needs. That has been my experience (or should I say Sophie's) in some part.

But, hey, don't think I'm telling or saying to you that the above thoughts are more important than whining and complaining about our kids' elementary school education.

Ahem...

If you're of like mind, join me and spread the word. Let me know what you think!

Update: On rereading this post, I'd like to clarify that my thoughts differ dramatically when it comes to high school and, perhaps, middle school, when I think some more serious consideration is due. I object, mainly, to schools for really young children that cost too much, have too many expectations and set children on a track too early.

Where I've Been

I got back last night from a few days in Atlanta. I was attending a conference as the Parent Co-Chair of an organization called NICHQ (National Institute for Children's Healthcare Quality). The project we're working on is increasing access and improving the quality of healthcare for children with special healthcare needs, specifically epilepsy. As the parent co-chair I work to ensure that each team working on the initiative has a parent partner who is involved in the work. The conference occurs three times in the year of the project and is a collaborative effort -- teams from all over the country come into it ready to work on improving the quality of the healthcare they are providing in their particular clinic, hospital, state, etc.

Anyway, I had the opportunity to do a "reading" of my essay in the new anthology Cup of Comfort for Special Needs Parents (see sidebar under Tooting My Own Horn for more info). I'm getting used to speaking in public after doing this work for a few years, but I'm always nervous to read my own stuff. It went well and a lot of people came up to me afterward to tell me how moved they were. It's galvanized me to continue working on this dang book that I've been writing for what seems like forever.

So that's where I've been. Now I'm home, working through hundreds of emails, piles of snail mail, laundry, telephone calls and catch-up. I've already had a conversation with a pharmacy in New York City that is going to order and send me the drug that Sophie is going to try next.

What?

Did I just say another drug trial? Well, yes. The drug has been around for a long time but isn't available in the United States. It's a benzodiazepine that we're getting from Canada. From what I understand it isn't economically viable to approve it for use in the United States because there are so many derivations of it. The Neurologist thinks that it might help Sophie through this hard time. I've heard about it for years but could never get up the energy to pursue it. I don't really have the energy now to pursue it, but I don't have the energy not to either. The downside is that we have to pay for it, but it's relatively inexpensive compared to other AEDs (antiepileptic drugs). Who knows -- maybe if it works we'll move to Canada?

Wish us luck.

And by the way, the drug is called clobazam or -- get ready: FRISIUM. The name sort of makes me feel chilly.

Or reminds me of the French word frisson.

Noun 1. frisson - an almost pleasurable sensation of fright; "a frisson of surprise shot through him"
quiver, shudder, tingle, chill, thrill, shiver
fear, fearfulness, fright - an emotion experienced in anticipation of some specific pain or danger (usually accompanied by a desire to flee or fight

PERFECT, or should I say PARFAIT, non?

Corner View Wednesday

This week's theme is The Great Outdoors. I live in Los Angeles, in the beautiful state of California. The weather here is sublime, almost all the time, and the colors technicolor. Really. I absolutely love that one can go to the beach, the mountains and the desert all in one day. Not a day goes by that I don't feel blessed to live in such a gorgeous climate. Because I've only just arrived back in LA after a business trip to Atlanta, GA, I'm late with my post and really only had the time to cull from my very large picture files. Here are some random shots of the great outdoors just minutes and at the most, two hours, from my backyard.

Here no words are necessary: the Hollywood hills:

And here's the reservoir in Hollywood, and don't tell anyone about this photo because evidently you're not allowed to take photos of the water supply...
!

And here's a delicious shot of Santa Monica:

with Malibu in the background and a typical site in the foreground:


some random flower shots that are just about everywhere all year round:

This might look pretty but it's actually the ominous light when there are fires burning somewhere nearby:

More random flowers:

And snow and mountains literally an hour or so away:

For more Great Outdoors please click on the following blogs from around the globe:

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, 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, vanessa, britta,virgina, april, rebecca, b

The Best of Birthdays

It's Mother's Day today, but it's also Oliver's birthday: May 10, 2001. And I've been upstaged. He's eight years old, my youngest Boy. When I had him, two years and nine months after Henry and six years after Sophie, I called him My Dessert. He was one of those babies who stayed in a little ball all the time, his soft head tucked under my chin. He was gentle and sweet and oh, so beautiful.

But then he grew. He stayed beautiful but not gentle and only sometimes sweet. He went through a stage when he first began to talk when he said I hate everyone and everything.



He got into trouble when he was about two and a half and said I hate Santa.

He has said all manner of shocking things, including Jesus is boring to a carful of Catholic schoolboys three years older than he. When I asked him what he wanted for Christmas one year he replied Nothing. I want to be Jewish.



After a young babysitter watched him one afternoon, he commented to me that he'd seen the woman's "crack." When I asked him what he meant he pointed to my breasts and said, that. What is that crack? I told him it was called cleavage and he said, very quickly, I want to put my finger down that lady's crack. He was barely four years old.



Oh, Oliver, my dessert. A face like an angel and a tongue that could cut you down. He sucks his thumb and carries a blanket. He loves our dog Valentine more than anyone else. He is fierce and loyal and irreverent and drives me crazy. He has driven me to tears but more often makes me laugh.


He is honest. He has wondered aloud and worried about who will take care of Sophie when I get old. I don't want to take care of her, he said. But he always wishes that she would not have special needs.

He's my dessert.

He's insisted that he wants to be a mailman when he grows up, because I like the shorts, the truck and I'm a good sorter. He also wants to live in our back cottage when he gets older, by myself with no wife or family, he told me.

My son the Mailman who lives in my backyard by himself. Should I be nervous?

Happy Birthday Oliver. God, I love him.

Affirmation of Instincts

Good news: Sophie does NOT have ESES, the big bad syndrome that we were afraid had reoccured.

Bad news: We're back to square one which means what next?

Good news: Sophie is sleeping in her yellow and purple room.

It's always good to end on good, don't you think? (and thanks for all your concern -- as always...)

Update

Today was the day that we went over to UCLA and checked Sophie in for the video telemetry that will determine whether ESES has reoccurred or whether we're just dealing with the usual mess.

I wanted to do a long, clever post and this morning, I took a lot of notes. But the fire within me is burnt out and all I've got is this:

I.M. Pei, the famous architect designed the brand-spanking new "Best of the West" medical building and if hospitals were churches this would be the GRANDADDY cathedral of them all. Absolutely incredible.

There's only one problem:

There aren't enough beds and we waited over seven hours for one to open up. (We were told over and over that when the hospital was designed it was over ten years ago and they just didn't plan for the growth -- wtf?)

Seven hours with Sophie in a stroller. After five of those hours, the EEG tech hooked her up with just the electrodes so we went back down to the lobby afterward to wait a few more.

One I.M.Pei Building

One Harp Player in the Lobby

A Meditation Room

A Peace Garden

Seven Hours Waiting

Four Giant Seizures in a Stroller


I had the thought that I was in an alternate "Dr. Strangelove" movie -- one where all the fancy donors and doctors and political figures sat around a table planning the place and FORGOT to make enough beds.

When we were finally settled in our room, our fabulous nurse, James, stood patiently listening to my rant and nodded his head.

"It's THE BEST IN THE WEST" he said, his voice dripping with irony and tact, repeating a poster slogan that is displayed all throughout the hospital.

Bullshit.