Music of the Spheres

I took the kids up to Griffith Observatory and while the lines were too long to go into the planetarium we enjoyed walking around the exhibits inside. I more than enjoyed it, actually. I was mesmerized. Maybe it was Sophie's huge, ugly seizure in the parking lot or the end of the year, but when we reached a long hallway that began with The Big Bang and then proceeded through time to the current day, I wanted to weep. The trail of billions of years was marked by some one's collection of astral jewelry, 2,500 moons, stars, suns and planets swooping and glittering along a hallway, marking time's odyssey. It was a strange and wonderful and unwitting end to my year. There's something about remembering that my place in the grand continuum is really so very, very tiny that is oddly comforting. I don't feel belittled but rather a part of. It feels terrifying and fantastic at the same time.

I guess I could go on and on about time and space and all that blather. But I think I'll end the year with a nod to the universe.



To Galileo and chaos.







To James Dean and Einstein:





To Saturn and Hollywood:





Happy New Year to all!

Like Riding a Bicycle

The boys and I went ice-skating this evening downtown at Pershing Square. This is Los Angeles' lame, albeit charming, attempt to replicate Rockefeller Center. It's a tiny ice-rink in the middle of the city. There are a scattering of tall buildings and with the Christmas angels lit and poised over the rink, it looked quite nice. We went with Oliver's Cub Scout pack, and only a few intrepid parents actually got on the ice. I felt bold (after all, I'd spent the first ten years of my life in the northeast) and strapped on some size 9s and then helped both boys onto the rink.

I'd forgotten how much it hurts to ice-skate. Is this because I'm old and out of shape or has it always hurt? And I'm not talking about falling. My feet felt like they could have frozen up in a cramp at any second and the burning in my ankles and shins was intense enough that when I stopped at the wall, I had to make a point of not wincing. But I could skate. I wouldn't want to look at a video of me or anything but after a few hobbled rounds I started gliding a little and then felt that old rushy feeling, the ice coming up at you in cold and the swish of the blades. My arms flew up and out and I'm sure that I looked ridiculous, but it was exhilarating. Henry and Oliver took slow and painful steps around and around the ring, Henry falling over and over and Oliver more careful to just make it around. The people who "skate" in Los Angeles can't really do it (there's even a sign on the outside of the rink that says, SKATE AT YOUR OWN RISK) so there was a lot of wild flailing and falling and laughing. There were one or two hot-shots, like always, one man in a pair of tight beige pants whizzed by me on a slant a number of times and a young kid in a red sweatshirt positively terrorized the skaters with his zipping and cutting and reckless racing.

We skated for about an hour and just before it ended, I got a little cocky and went a little too fast and lost control and then went down on my hands and knees. And it hurt like hell. And I don't even want to picture what it looked like as I got up.

The boys want to go later this week. We're thinking about trying out the rink in Santa Monica.

I Wish That I Had Known Her

Here's a link to the obituary of a woman, Harriet McBryde Johnson, who was quite a radical in the world of disability. The title of the piece is Happy Nevertheless: An Ongoing Conversation about a Disabled Life.

I am most struck by Johnson's constant "attribution of rights to humans with severe intellectual disabilities." I don't know her work but will look it up, now. This short article about her makes me think of my own inchoate longings, what I find most difficult to articulate about Sophie. It makes me think, too, of the revered osteopath Dr. Viola Frymann who has seen Sophie for most of her life and has worked her entire life (and she's well into her 90s now, I think) to improve the potential of all children, regardless of ability. Her primary motivator, other than God, is her belief in the integrity of all life.

I went to a young man's bar mitzvah today, my first. The boy's name is Danny and I've known him and his mother since I moved to Los Angeles over ten years ago. He has a head of bright red hair and speaks with an augmentative communication device. He can walk, awkwardly, and also uses a wheelchair. He loves movies and song and, evidently, his Jewish heritage. The ceremony was beautiful, most of it conducted in Hebrew with much participation from various people in Danny's life. The rabbi in charge made a point of telling everyone that Danny's life was a miracle and that he had worked hard to get to this important day. He said that his body was not perfect but his soul was, and that made sense. During the ceremony, there were many "disruptions," as other children with various disabilities interrupted, walked around, made noises and otherwise acted as if they were in worlds of their own. Some of these children appeared severely autistic and some were just young. What was most unusual, though, was the complete acceptance in the room, an utter lack of judgement or discomfort that I have rarely felt in any other "public" place. I felt envious of the community, there, and aware that my own reservations about Sophie have perhaps limited the community that we might have been a part of. Part of that limiting was self-preservation, trying to carve as normal a life as possible for us and that often means leaving Sophie out of things. Part of the limiting, too, was Sophie's general comfort level, and I don't have any real regrets about that. I was struck and inspired today by the sense of inclusion in this community, a religious one that believes all of God's children have a place and that even the damaged have something, and often something more to offer.

Thank you Danny and Michelle and Aron and Rachel for sharing your life with me today. It was beautiful.

Popcorn

The other night I took the kids to see the homeopath in Santa Monica. We had a 5 o'clock appointment and rather than battle the west to east traffic, instead of driving home we went to see Despereaux, the new animated children's' movie. I haven't taken Sophie to the movies in ages -- she's generally really antsy and uncomfortable in them, makes a lot of humming noises (mmmmmmmmmmmmm)and just doesn't appear to enjoy them. But it had been a really long time, and I thought this one wouldn't be the frantic, frenetic spectacle that so many kids' movies are these days. I had read the book to her and to the boys when it first came out and knew that it was a sweet story, and the previews made it look beautiful. This was what I told myself along with the requisite it will be nice to go to the movie with all my kids, not just the boys. Something normal. And it was fun, in the beginning, before Sophie started to get restless and started humming her monotonous mmmmmms and wiggling around and then I just got up with her and walked out to the lobby for a while. The boys were avidly eating popcorn and watching the movie and barely paid attention when I told them that I'd be right outside.

Sophie and I walked up and down the lobby for a few minutes and then she wanted to sit down on the floor, but I didn't let her. I thought that since she seemed tired, we could go back in the theatre. When we walked in and sat back down, she was quiet and I turned to watch the movie. Within seconds, though, Sophie stiffened beside me and began to have a HUGE seizure. The kind where she yells loudly, a guttural groan and stiffens and jerks. My impulse is to hover over her, protect her, almost wrap my body around the space that surrounds her. I think it's an instinct to shield her from enquiring eyes, and when I do it I am aware of those around me but I almost consciously deny them. I will everyone to disappear so that I can exist there for her and so that she can have her seizure and be done with it. I create a bubble of sorts or at least I do in my mind. For a brief second I glanced over my shoulder to my right, at the boys and saw their profiles illuminated in the movie light. They were what I can only call stuffing their mouths with popcorn, raptly looking at the movie screen. They didn't appear to notice, but it was only a second that I even noticed them and that is what I saw.

When the movie was over and we walked out, I asked them whether they knew Sophie had a seizure. One of them said, "yeah, it was a big one." I asked whether they heard her groan and one of them said, "yeah, it was loud." I asked whether anyone else had heard and one of them replied, "yeah, everyone turned around."

I've been thinking about this for three or four days (through Christmas and the aftermath), feeling guilty that I brought her to the movie and that it somehow caused her to have such a big seizure, and feeling sad that we really can't go to the movies right now all together. But mostly what I'm wondering is this: are Henry and Oliver so used to Sophie's seizures that they are able to simultaneously know that one is occurring and that I'm taking care of it and therefore can continue to toss popcorn casually into their mouths and pay attention to the movie AND know that people are staring and looking? In the same way that I create this figurative bubble around myself and Sophie but their own?

Or are they just eating popcorn and watching a movie?

It's Official

I got an email today from the editors of the Cup of Comfort series of books. Here's what it said:

Dear Elizabeth,

I am pleased to inform you that your wonderful story INVISIBLE CHILD has been selected for publication in A Cup of Comfort for Parents of Children with Special Needs.

Apparently, all those edits helped. The volume is a hardback and comes out in April of 2009! Stay tuned.

Santa Came

Oliver asked for the $10,000 jeep up until the very last moment. When he woke up in the morning, this is what he found next to the plate of crumbled cookies (Santa left the head of the gingerbread man and the hook of a candycane):

Glad he took care of it.

More Christmas cheer:






At the end of the day, the boys did the annual Gingerbread Stomp. This is a tradition that The Husband initiated several years ago, when the elaborate gingerbread houses he constructed got very, very stale. He takes the house outside and puts it on the ground and then the boys go wild, stomping it to bits. Sometimes, they even eat a few pieces.This year he didn't have time to make one, but yours truly helped them to make a Spongebob Pineapple Gingerbread masterpiece that underwent The Stomp. I know. Very, very strange. It's sort of a combination of Lord of the Flies and pure, unmitigated fun.


Santa's off to bed.

Merry Christmas!

Send your own ElfYourself eCards

The children are asleep and Santa's work is beginning!

The 101st Post

I'm not sure what one does to mark the 100th post of one's blog. But this is my
101st. Should I list 101 personal characteristics? I think not.

Instead, I send each and every one of my loyal readers a deep and heartfelt wish to have a very merry Christmas, if that's what you celebrate, and a happy winter solstice/end of the year to the rest!

And now I'm on to Christmas Eve childrens' mass and a sumptuous dinner at some good friends. The boys are anticipating Santa's arrival. Oliver told everyone that he is going to shoot Santa with his nerf gun tonight and use the body to prove that he really is "true". Oliver also asked Santa for the $10,000 army jeep that he saw in the FAO Schwarz catalog.

God help me.

Another Boy Choir Carol

Carol of the Day

Poor video but awesome sound -- The Soweto Gospel Choir:

Plastic Schmastic

I don't know about you, but I'm tired of plastic. I'm talking about those ubiquitous cards that you can buy in lieu of something of beauty, an object. I was shopping this morning at Ralph's, our local grocery store chain, and came to the end of an aisle that was anchored by a post, a column of literally hundreds of these plastic cards. Olive Garden, American Express, McDonald's, Nordstrom, Kohl's, the list goes on and on and the vast array of amounts -- $5, $10, $25, $50, $100 -- was bewildering.

I hate gift cards.

I'm no stranger to credit cards and pack a lot of plastic in my own wallet. But this custom of giving someone a gift card instead of a gift just really bugs me. If it weren't for the luxury of a blog, I might just think about this endlessly, an interior kvetch as I went about my day, and forgive me if you think I should be writing about more important things. Like Sophie, my disabled daughter, for instance. Or the joys of parenting two wild and crazy little boys. Or maybe The Husband -- fertile ground, there.

But I want to talk about my growing disdain for gift cards. I want to be brutally honest.

I hate gift cards. I think they're easy and lazy and thoughtless. They're ugly, too. I've bought my fair share of gift cards for other people, and I always feel uncomfortable with it, like I haven't really given a shit and I might as well just get a giftcard. Buying gift cards makes me think of the long lines at Kmart, the people who go to Best Buy in the wee hours of the morning the day after Thanksgiving, the mindless texting of the teenager, the person walking her dog with a Bluetooth hanging from her ear, yakking into the air. Buying a gift card makes me think of the many I have in my own wallet, the $1.34 I have left on a Starbucks one, the $13.56 I have on an H&M. I have bits and pieces of plastic right now taking up space in my wallet.

I realize that this is a "fancy person's problem," as my friend Debra calls it. My friend Johanna and I might call it a "bourgeois complaint." But this is a blog, so I don't care. And if a person visiting it thinks this blog is written by a shallow, dull woman, well, they should just check out some of my other posts. (You'll get your insight, new reader, trust me -- the depths of feeling and horror that I plumb are infinite).

But I digress.

I want the person buying me a gift to really think about ME. About what I'd like. I want to have dropped hints for a while, have browsed through some fabulous store or website and that person who's going to buy me a gift just knows that I'd like it. Or maybe it's handmade and weird and creative. One of my favorite gifts that I ever got was from an old ex-husband (I have about a hundred of them). It was a book of Buddhist poems from a used bookstore, and he'd underlined one of them in the Table of Contents. When I went to the page, there was the most perfect, beautiful poem. Something about the moon. And me and him, probably.

Lest you think I'm a complete bitch, I don't want to go out and buy a bunch of giftcards, either. I want to carefully choose something for those I love and appreciate. I want to actually take the time and do it. Call me insane but I'm yearning for a time when Christmas gifting was more than a slew of plastic to be spent at a later date. In fact, I'd rather get some crazy ugly Christmas sweater with bears golfing or something than a gift card. Just think of the stories that sweater would tell.

Just Because I Had To

Carol of the Day

Call me a nerd (and was I ever!), but I loved listening to John Denver on my stereo in my room. I LOVED him. And John Denver at the Vatican? Gotta love that:

Come On In

This is the bright yellow door that leads you into a culinary paradise. It's called The Larchmont Larder, and it's the fruit of many years of labor. The owners are The Husband, Michael Beglinger, and my dear, dear friend Katie Trevino.

If you didn't know, The Husband is a chef and a mighty fine one. He was born in Switzerland and trained classically but can cook anything. He wooed and won me with the likes of barley soup and lentils, roasted root vegetables and miso cod. He can butcher meat and bake pastry, and you can experience it all at The Larchmont Larder.

And there are few words to do justice to Katie. Brilliant, funny, incredible style. She made the place SENSATIONAL.

You're going to love it.

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.

Winter Wonderland

This isn't really a carol but you've GOT to see Tom Jones dancing. And I'm imagining myself as the pink-shirted lady in the audience.

Emerging from Haze

Sophie's class was in the annual Holiday concert again this year, and I set myself up, once again, for a ride home in tears.

Why?

As you might have noticed, I've felt a little more stressed than usual, these days, especially in regard to Sophie. Although this past week was actually a pretty decent one for Sophie, I've spent a lot of mornings in tears as she's seized her way through the first hour or so of waking. And I knew that her class had been "rehearsing" for their performance in the school recital. To be honest, I felt obligated to go, probably more so than I do with the boys. It's part of this very stubborn insistence that Sophie's life be as "normal" as possible. That she has a life, actually, apart from her disability.

The trouble with this insistence, though, is that it leaves out the fact that nothing is actually normal in her life. So, when I rushed into waking her up this morning, she actually had about forty-five minutes or so of those horrific seizures that I've told you about. The ones where her arms and legs fly out and about and she rolls onto her stomach and buries her face in the bed with such intensity that I have to protect myself from getting hit. When that was over she was very dopey but I almost forced her into the kitchen for breakfast (We have to go. You're in the SHOW!!) was the ridiculous refrain I uttered knowing that if I was in my right mind I'd just say To hell with it. We're staying home. But my chin was set with determination. Sophie's in the show. It's normal to be in a holiday show. We can't let them down.

We went to her school and I left her in the classroom and joined the several hundred other parents (NONE of whom I know) in the school auditorium. I've told you before that Sophie's school is very disadvantaged but that her particular special education class is fine. There's basically no booster club at this school and the program was translated into Spanish. I sat on a folding chair near the front and listened to the hordes of people babbling away in Spanish, crying babies and a guy behind me who spoke in a low, husky voice the entire time on his cell phone. In Spanish. I've got nothing against Spanish and would have been equally, if not more, annoyed had the language been English, but the combination of something unintelligible coming from behind, the crying toddlers, the people who just wouldn't sit down and the nervous anticipation I had for Sophie to come in nearly drove me nuts.

Sophie's class came in about an hour after the program began, and I was horrified to see that the two most disabled children (Sophie was one of them) were wheeled in in their handicapped chairs that had been turned into some kind of red car-like structure and they were literally deposited right up front. I could barely see Sophie over the top of the car and inwardly groaned when I did catch a glimpse of her. It wasn't the jaunty Santa hat with the dangly sequinned earrnings hanging from it. It was her head, hanging, her eyes half-closed, her whole body language one of what appeared to be utter fatigue and misery.

I couldn't stand up in the middle of my row, but I wanted to. I wanted to run up the aisle, away from the enquiring eyes, grab her chair and just run. Run out into the dirty, run-down parking lot and drive away in my yuppie Mazda.

Some of you might wonder: where's the magic? Where's the warm, fuzzy inclusion feeling? The beauty of the disabled standing alongside the abled? Although it might be a reflection of my general grouchiness, I HATED that Sophie was so different today. I allowed it all to get the better of me. I stayed until the end and weakly congratulated the class. Sophie was still slumped over, drooling, half asleep. The other kids in her class were happy because they had done well.

I fled in my Mazda, letting myself cry because I felt like shit. I was heading north, back to my house, and the mountains that surround Los Angeles, the ones that you don't see much of during the year, were all of a sudden there, crystal clear and snow-topped ahead of me. On winter days like these, the sky is incredibly blue and the mountains appear almost ridiculous, like a backdrop that has been dragged in for a show.

Sophie had been dragged in for the show. I wished today that I could have accepted this morning for what it was. Not a good morning to go to the show. I might not have hoped that things would be normal, because they're just not. I wouldn't have set myself up for such disappointment. I'm irritated that I do that over and over again. It's the flip side of hope. Crazy hope.

The day went on. I made my way, eventually, to the boys' Christmas concert. Oliver wore a green elf hat and stuck out in the crowd. The songs were sweet and when it was over, we got in the car and headed home.

I thought a lot about acceptance today and decided that I have to revisit it. When Sophie came home, she looked relieved. Or at least I hope she did.

Fall on Your Knees

Here's today's carol, thanks to Nat King Cole. And looking at a warm fire in sunny Los Angeles is good.

A Carol a Day

I thought I'd post a carol a day until I get sick of them. I've always loved this rendition of an otherwise boring song because Aretha Franklin can really belt it out. I know the video is sort of corny but her voice is just sensational. I like to play it really, really loudly until my kids tell me to "STOP!"

Visions of Sugarplums

While you were prancing around town in your holiday sweaters, elf hats perched jauntily on top of your cheerful heads, enjoying the season (come on, I know you were!), I was...

lying on an examining room table for HOURS as my right breast was prodded and examined.

On Monday afternoon I was driving to pick up my boys from school when the mammogram place called to tell me that I needed to come in for a follow-up. When I asked the receptionist why, she said, "The radiologist sees something and wants another look."

And that was that. Literally. The conversation ended and I had to go pick up the boys. I won't go into the long and boring interior monologue in my head that had to do with breast cancer and going bald and being sick and maybe even dying. I called up some bitter sarcasm, actually thinking I don't really have time for this. I stifled some panic (because I'm not feeling stalwart these days and knew that a diagnosis of cancer, well, it'd be hard to be a fighter, at this point in my life) and cheerfully greeted the boys and went home. I did all the things I was supposed to do that afternoon and evening, things like taking Oliver to Cub Scout carolling practice, making dinner, overseeing homework and baths and bedtime stories and bed. I watched some tv, read a little and wrote a post about FEAR.

And then I went to bed and I did sleep.

In the morning, my friend Johanna brought over some huge and grotesque donuts from the best donut place in town. I'm a donut lover but I could hardly eat them. We chattered mindlessly and then she went on her way. Another friend, Amanda, came and picked me up and took me to the appointment. She brought me some chocolate and a reindeer purse and in the car two magazines. We chatted mindlessly until we got to the hospital, and when they called my name she pressed my hand and smiled.

The next few hours were the usual: freezing cold machines and even colder rooms. My breast was smashed and flattened and the technician made idle talk and peered intently at the machine but didn't say anything about it. She disappeared for a bit with the film and came back in for another shot. I was moved to another room and another technician came in and smeared some jelly over my breast and did an ultrasound. I read through a copy of Reader's Digest from May of 2006 and a Good Housekeeping from October 2007. I tried to remember my friend Barbara, the writing teacher's advice to TAKE NOTES when you're going through a difficult situation. My notes weren't written down but they included:

1. pockmarked ceiling tiles
2. the wall clock's second hand seemed awfully slow, slower than usual
3. it's freezing in here -- why?
4. what's behind those cabinet doors?
5. the line of stain at the tip of the baseboard
6. what happens to a breast that has been augmented when it's smooshed in the plates?
7. what if I have cancer?

There was a sense of boredom and then there was a sense of utter terror. It was strange to be both bored and terrified at the same time and I'm hard put to articulate what that feels like. Perhaps you already know.

A couple of hours later, The Radiologist poked (and yes, she really only POKED) her head in the door and said,

"It's just a cyst. See you next year." And she left.

Just like that. I slowly sat up and even more slowly got dressed. I went out to the waiting room where Amanda was patiently waiting for me and sat down next to her. I lay my head on her shoulder and said, "It's only a cyst." We laughed and got up and went to our car. I made the comment that I thought I should be kicking up my heels like Woody Allen did in one of his movies when he found out that he didn't have a brain tumor.

I want to say that visions of sugarplums began dancing in my head, but they didn't. I had this small moment in time, in my life, when something routine turned really, really horrible and caught me off-guard. And the main thing I feel is how utterly strange it is to be alive when there's so much that can get you. So quickly and so randomly. There is a weird gratitude to that.

Fear

Fear, I discovered today,is a lump right in the middle of my chest. At first it's a quickening, a roar in the blood and then something is stuck right there and I try to brush it away with my hand but it's stuck there. I know it. I've felt it before. I can hear the blood in my vessels, in my veins, in my ears and everything is pounding but my head is light and it's right there in the center. From a brush to a press to a hold myself there, mindful that it's a physical sensation that has nothing to do with the actual fear. I take one, two, three deep breaths in and the fear in the middle wants to stick, wants to stay but the breath loosens it and it starts to seep out toward the edge like a flower, like blood, like a pool. And then it is gone and I go on.

A Website and a Poem

Check out this website called Marissa's Bunny. Scroll down and read about the bunny's visit to Los Angeles. The picture is of the bunny at the top of our Christmas tree. Learn a little about Infantile Spasms, the devastating seizure disorder that Sophie was diagnosed with when she was three months old, almost fourteen years ago, the disorder that this little baby girl, Marissa, is battling. And pass on the knowledge when you get the chance.



Here's a real beauty from today's Writer's Almanac:

Christmas 1963
by Joseph Enzweiler

Because we wanted much that year
and had little. Because the winter phone
for days stayed silent that would call
our father back to work, and he
kept silent too with our mother,
fearfully proud before us.

Because I was young that morning
in gray light untouched on the rug
and our gifts were so few, propped
along the furniture, for a second
my heart fell, then saw how large
they made the spaces between them

to take the place of less. Because
the curtained sun rose brightly
on our discarded paper and the things
themselves, these forty years,
have grown too small to see, the emptiness
measured out remains the gift,

fills the whole room now, that whole year
out across the snowy lawn. Because
a drop of shame burned quietly
in the province of love. Because
we had little that year
and were given much.

Why We Left Catholic School

The boys attended Catholic school for years -- four for Henry and two for Oliver. For the most part, we liked the school but mainly because it was in our community which is a wonderful one. The families at the school were local and diverse. It is old-fashioned but academically rigorous and relatively cheap. When I decided that it was the best place for Henry, we were going through some rough times with Sophie. Going to a private school in the neighborhood with a lot of my friends seemed like the right thing, the safe thing.

Time went on and years went by and I was never entirely happy with my kids being there. The size of the classes was too big and the academic pressures immense. There was a puny art program and the science was abysmal. The PE teacher was completely inappropriate, a throwback to another era best left behind. My older son often had more than two hours of homework a night and my little one was getting the idea that he was a "bad reader" when he couldn't keep up. He was in first grade! I felt as if the pressure to be on a certain path (through all the grades, onward to the Catholic high school, etc.) too emphasized and it bugged me that the boys already even knew what private high school they wanted. The grades and rankings came incessantly, and the discipline (it was Catholic school) and conformity was intense. There was much to love about the place, though, its sweetness and safety in the middle of Los Angeles. The community is a warm one and the families devoted to one another. That was good.

I never went to Catholic school so I didn't have the same fond feelings that most of my friends had. The stuff about conformity and discipline and a not uncertain disdain for those who are "politically correct." While I consider myself a woman of faith, I winced when I heard my son's third grade class reciting the Act of Contrition every afternoon before the bell rang. This is when you beg God's forgiveness for your sins, your impure words and thoughts, etc. Frankly, it made me sick. While I'm the first person to abhor politically correct bullshit, I knew I had to make a change for the boys when a good friend responded to my complaint about something or other: "Well, we all survived." And then a teacher, in a casual conversation told me that she thought some people didn't want to change the school; they wanted a different school.

Survive? I thought. We can certainly do better than survive. Survival was dealing with my daughter's special education needs for fourteen years. And sitting down with both boys night after night, plowing through pages and pages of worksheets...well, I felt like I was a homeschool mother. An angry, stressed out one who was handing off her boys to a teacher who had 35 other kids in the class and couldn't really tend to my boys like I wanted them tended to.

We live a stressful life, the Beglinger family. Unusually stressful. Life is stressful for everyone but particularly so for those living with someone who has uncontrolled seizures. And while Michael and I do our best to shield the boys from a lot of it, it is what is, and their lives have been both enriched and altered in harsh, harsh ways because of it.

The idea of change versus different was a real Eureka moment.

I wanted something different for my sons.

It was sad to leave my friends behind, and the boys were bewildered at first, but we made the change. And they're thriving. They got into -- by lottery -- a neighborhood charter school that is progressive and public. They have made new friends and love their teachers. There are only 20 children in each class and two full-time teachers. They have a fantastic art and music and physical education program. Most importantly, they are enjoying learning. They don't have much homework to speak of and Henry, my older son, has rediscovered the joys of reading. He has time to read now and devours books. Oliver, who had been struggling, comes home from school and tells me what he's learned. "I have fun, Mom," he says, when I ask him why he likes school. They like the school part of school, not just the extras. They go out to the garden when it's time for botany. They do science experiments and write up their observations. Henry's class had a debate during the election. He wore a suit to school and debated the role of taxation. I could go on and on.

And putting up with a bit of political correctness is a small price to pay for today's afterschool program of Circus Circus. Both boys had stayed after school for an enrichment class and today took their bows with their new skills. It was all a little ridiculous but incredibly entertaining.

Afterward we went to have some pizza because they didn't have any homework.

Uber Blog Award

Kate Hopper at Mother Words: Mothers Who Write awarded me the Uber Amazing Blogger Award today, and I'm just thrilled! Thank you so much, Kate.

Now I have to nominate five (or six) other blogs for the Uber Award. Hmmm...this is really difficult because I have a LONG list of favorite blogs and even more on my Favorites Page on my computer. I've decided to narrow it down to those who post pretty regularly. Here's only a start:

1. Laura at Piece of Cake because she got me started blogging and her writing is hilarious and poignant and true. Plus, she's got 150 children all living in a small apartment.
2. Vicki at speak softly because her writing is like crystal and can shatter your heart but give you strength.
3. Jeneva at Busily Seeking...Continual Change because she is able to convey her brilliant, original, weird thoughts about her disabled son AND poetry in a way that I've never read before. Plus she's a poet, and I love a poet.
4. Denise at Birthmother because she is one of my first true writer friends and her story of giving up her son for adoption many years ago and then finding him is a thing of beauty. She also has another blog called His Big Fat Indian Wedding which is a hilarious and sorrowful documentation of her recent divorce.
5. Meredith at spirit~of~the~river because her writing is mysterious and lyrical and her photographs are amazing.
6. Barbara at Writing Time because she is my mentor, the woman who gave me the faith to write again and whose blog is an inspiration to many.

Now, these bloggers need to do the following:

1. Put the logo (award image) on your blog or in a post.
2. Nominate 5 (or 6) blogs that you feel are Uber Amazing.
3. Let them know that they have received the Uber Amazing Blog Award by commenting on their blog.
4. Link to the person who gave you the award (which would be me, of course).

The Last Ding Dong of Doom

On this day in 1950 William Faulkner gave his great acceptance speech for the Nobel Prize for Literature. Whether you've read him or not or think he was a drunken bore, if you've never heard the speech, listen here for some beautiful words that resonate, particularly, today. I've always pulled this speech out when the world around seems near to unbearable and when anxiety creeps around stealthily and seems to be winning. I read them and feel, if not comfort, then solidarity with those who believe. And I won't talk anymore because Faulkner does it so much better:



Here are the words:

I feel that this award was not made to me as a man, but to my work--a life's work in the agony and sweat of the human spirit, not for glory and least of all for profit, but to create out of the materials of the human spirit something which did not exist before. So this award is only mine in trust. It will not be difficult to find a dedication for the money part of it commensurate with the purpose and significance of its origin. But I would like to do the same with the acclaim too, by using this moment as a pinnacle from which I might be listened to by the young men and women already dedicated to the same anguish and travail, among whom is already that one who will some day stand where I am standing.

Our tragedy today is a general and universal physical fear so long sustained by now that we can even bear it. There are no longer problems of the spirit. There is only one question: When will I be blown up? Because of this, the young man or woman writing today has forgotten the problems of the human heart in conflict with itself which alone can make good writing because only that is worth writing about, worth the agony and the sweat. He must learn them again. He must teach himself that the basest of all things is to be afraid: and, teaching himself that, forget it forever, leaving no room in his workshop for anything but the old verities and truths of the heart, the universal truths lacking which any story is ephemeral and doomed--love and honor and pity and pride and compassion and sacrifice. Until he does so, he labors under a curse. He writes not of love but of lust, of defeats in which nobody loses anything of value, and victories without hope and worst of all, without pity or compassion. His griefs grieve on no universal bones, leaving no scars. He writes not of the heart but of the glands.

Until he learns these things, he will write as though he stood among and watched the end of man. I decline to accept the end of man. It is easy enough to say that man is immortal because he will endure: that when the last ding-dong of doom has clanged and faded from the last worthless rock hanging tideless in the last red and dying evening, that even then there will still be one more sound: that of his puny inexhaustible voice, still talking. I refuse to accept this. I believe that man will not merely endure: he will prevail. He is immortal, not because he alone among creatures has an inexhaustible voice, but because he has a soul, a spirit capable of compassion and sacrifice and endurance. The poet's, the writer's, duty is to write about these things. It is his privilege to help man endure by lifting his heart, by reminding him of the courage and honor and hope and pride and compassion and pity and sacrifice which have been the glory of his past. The poet's voice need not merely be the record of man, it can be one of the props, the pillars to help him endure and prevail.

Boredom

I've been reading a lot, lately, about over-zealous parenting. Sometimes called "helicoptering" or "hovering parent" I believe what it signifies is the over-anxious, all-controlling, well-meaning, hyper-involved mother or father who overschedules and believes, implicitly, that their parenting is literally shaping the child in every which way.

Sigh. I'm bored with this topic, just like I was bored with the working versus non-working mom thing that seemed to go on FOREVER, a conflict debated ad nauseum in magazines, newspapers, NPR, radio talk shows, Facebook, book groups, Oprah. You name it, the debate's been on it.

I don't know if this stuff bores me so because I'm just not that conflicted about parenting and working and non-working or because I'm so conflicted that I've decided to just shut it all down (sort of like my son's decision to believe in Santa Claus despite already knowing that there isn't one).

In any case, I've been longing to write about this and suddenly realized (for lack of anything else to note) that I can do it on my blog.

This is what I think: Helicopter Parenting and the Debate Between Working and Non-Working Mothers (and I'm not talking about the economic necessity of working, just the debate about what is "better for the child" and the mother) is really a bourgeois luxury. Or not even bourgeois -- it's about privilege. It's about having nothing else to worry about.

What do you think? But don't bore me.

Yams

I've been wondering all day what and how much to post. I just got up off of Sophie's bed where I've been lying for a half hour or more, curled around her. She had had a bunch of seizures and I was trying to somehow breathe calm into her. When I closed my eyes I started reciting the Hail Mary prayer over and over but instead of saying "pray for us sinners," at the end I said, "pray for Sophie." I also visualized us, together, flying through the air and could swear that I saw something golden behind my shut eyes. What it was kept escaping me but I knew it had something to do with the words shook foil which I think is a line from a poem. But I'm not sure. It was a beautiful image.

So I had that to post but I really wanted to title the piece "Yams" because of a conversation I overheard last night while waiting for Mark Doty to read his poetry at the downtown public library. Mark Doty is one of my favorite writers of late -- his memoir Heaven's Coast is a touchstone for me, and I was thrilled to see him and listen to his poetry and wise, warm comments about poetry and life. But before the show started (and he read with two other poets), I sat in my seat and couldn't help but eavesdrop on the conversation behind me. I knew the women were on the edge of the end of middle age or already a few years into whatever comes after middle age. I knew this by the sound of their voices and later, when I looked, I was right. But I digress because here's the conversation I heard:

Lady #1: "I'm so sorry that we didn't make dinner beforehand."
Lady #2: "Oh, don't worry."
Lady #1: "No, I feel bad. Why don't you come over afterward for a yam?"
Silence
Lady #1 (again): "I had half a yam this afternoon but have the other half leftover. You can have the rest.
Silence
Lady #3: I do love a yam.

I found the image above on a google search, and weirdly enough it led me to a site called the Yam Art Museum. What are the chances of stumbling on something so strange and wonderful if I didn't have a blog?

And when I checked google for "shook foil," I got this which I knew I knew from somewhere:

God's Grandeur

The world is charged with the grandeur of God.
It will flame out, like shining from shook foil;
It gathers to a greatness, like the ooze of oil
Crushed. Why do men then now not reck his rod?
Generations have trod, have trod, have trod;
And all is seared with trade; Bleared, smeared with toil;
And wears man's smudge and shares man's smell: the soil
Is bare now, nor can foot feel, being shod.


And for all this, nature is never spent;
There lives the dearest freshness deep down things;
And though the last lights off the black West went
Oh, morning, at the brown brink eastward, springs —
Because the Holy Ghost over the bent
World broods with warm breast and with ah! bright wings.

- Gerald Manley Hopkins

The Monster

Over at Fighting Monsters with Rubber Swords, a fantastic blog by Robert Rummel-Hudson, I learned today that his little girl, who has a neurological disease, might also be having seizures.

My heart sank when I read this because Robert wrote so beautifully about how the spectre of seizures has been hanging over their family's head for as long as they have known of her condition. Hanging over their heads like "the sword of Damocles," I believe he said. Suffice it to say that the sword fell, long ago, on our heads and I might even add that the near-constant nature of Sophie's seizures and their resistance to intervention could be compared to a perpetual sawing of that sword or at least a surrealistic dropping of it, over and over.

This is a thought about disability that I've had for a while, and Robert's post brought it fresh up to the front of my head. And now out of my mouth or through my fingers (because when I write, I imagine a conversation that my fingers are channeling). If I knew fourteen years ago that Sophie would be here, now, still seizing, nonverbal, cognitively impaired and needing assistance with virtually everything, that my life would be the way it is, now, I would probably have at least wanted to kill myself. BUT, here's the thing:

Sophie is a beautiful child with curly hair and a perfect nose. She is surrounded by those who love her. She is, actually, all about love. We have a beautiful life and in many ways, her presence, the reason for her being is manifest in that beautiful life. We are fine, you see. My own life is fine, more than fine. I am thrilled to be alive, however difficult the daily is. When I wonder what the future brings, when I have intimations of its difficulty or fears of its uncertainty, I try very hard to bring myself back to this thought -- that the future, the then will most probably be the same. I have learned that whatever comes... well, it's incorporated and becomes the present. And it's all right.

I'm not sure if that makes sense in words, on the screen. If I say it, it does. I'm hoping that the sword doesn't drop on the Hudson's. But if it does, I'm sure, by reading his past posts and "knowing" the beautiful way in which he's led his daughter's life, that Mr. Hudson will be all right.

For Photo Lovers

Mary Tippee, aka Tebe Vivandere, woman w. Collis Zouaves during Civil War, wearing medals as she poses.

Check out what Google is up to: archiving all of the photos from LIFE Magazine. It's a treasure trove of photographs and images. Click here to see.

Angry Doctors

Dante's Hell (Botticelli)


There's a piece in the NY Times about angry, abusive doctors. Although it's getting better, there are, evidently, a considerable number of instances of what's called medical road rage, and medical errors, sometimes fatal, often result. I scanned the article which I ruefully admit is sort of like fuel to fire for me (I love to bash a doctor, you know) and found this at the end:

"Experts say the leading offenders are specialists in high-pressure fields like neurosurgery, orthopedics and cardiology."

I went to a consult, once, with a friend who had to decide whether or not to have this very famous brain surgeon operate on her child's brain. At some point during the surreal meeting, we asked the esteemed doctor what the risks were. He very casually said, "Well, I've done about five hundred or so of these surgeries and have only had two kids dead on the table." Dead on the table sort of hung there and while my friend, who was new to it all, just sat and thought God knows what, I wondered whether neurosurgeons should be allowed to use the word "kid" for one and "dead on the table" seemed like a phrase that shouldn't occur at all. It felt abusive, actually, and while the article I've quoted from talks about stress-related arrogance and such, I'm wondering what it is about the field of neurology that attracts so many... well, assholes.

I'm happy for people who have stories of miracles wrought or who, through the plain hard work and ingenuity of their doctors battle illnesses successfully. But I admit to feeling bad, too, when I hear of the miracles of modern medicine. Because it's not happening for us, for Sophie, for the kids like her. I realize it's sort of a defense mechanism to blame the doctors. I know that I am transparent psychologically in this respect.

I wonder if there's a divine plan at work here: high-pressure neurological illnesses like epilepsy demand a certain kind of parent(often angry and frustrated)who in turn demand a certain kind of doctor (angry and abusive). Maybe that just goes round and round or is a certain level in Dante's hell. Just a thought.

Waiting

It's the first Sunday of Advent which traditionally means we are awaiting the birth of Christ. I pull out the advent calendars for the kids, and this year there are three. I couldn't resist and bought a string of tiny, knitted stockings. In each stocking is a felt puppet, animals and angels, a Christmas tree, some elves. It was made by craftswomen in South America and I hung it on the bookcase tonight as a surprise for the kids tomorrow morning. The old calendar is a felt globe with 24 pockets and inside of each pocket is a little felt person dressed in the traditional garb of his or her country. At the top it says, "PEACE." The other is an old Starbucks cardboard box shaped like a Christmas tree. There are 24 tiny little boxes that you pull out and turn around. Eventually, you have a winter wonderland scene, and I put a little chocolate into each box. The boys and Sophie each have a turn taking out a chocolate and hanging a felt person on the globe. They always argue over who gets to start and who gets to finish, but the main thing is that they are waiting for Christmas.

I went to church this morning by myself. That was after I had pulled a quick u-turn in the middle of my street and screeched back up to my house. "Get out," I said to Henry and Oliver, "get out of the car and go inside." I won't go into the details but it was partly their incessant complaining and partly my own short temper. But they were suitably silenced when I "kicked them out" (what Oliver said, later) of the car. They looked back as I pulled away and while I didn't feel exactly good, I felt triumphant. I suddenly remembered my own mother and her periods of aggrievement when she'd lash out how no one appreciated her, how she just thought only of us, etc. etc. I remember feeling annoyed with her and guilty, too. Because she was right. We didn't think about her feelings nearly enough. And I wonder whether any children really do.

But, I raced off to church alone in my car feeling pissed off and strangely free. The priest was uncharacteristically inspirational and spoke about advent and waiting. When he said that waiting was a unique and peculiar human condition, I didn't think much of it. But then he mentioned a boy in our parish who had a terrible accident while skateboarding on Thanksgiving Day. He has a severe brain injury and his parents are basically waiting for his brain to stop swelling, for him to wake up from a medically-induced coma, for him to show what he can still do, still remember. I felt, for a moment, those parents' terror. The terror of waiting. I thought of the near-constant waiting that I do. That Michael, the boys and I do. With Sophie. Waiting for her seizure to stop. Waiting for her clusters of seizures to stop. Waiting for her seizure disorder to stop. Waiting and wondering, will it ever stop? I sat in the pew, a mother alone and wiped tears from my face. I sat and cried for the parents, for the boy, for me and my husband, for my boys and for Sophie. For all of us, waiting.

When I got home I pretended to still be a little bit mad, but the boys were sorry and Henry asked whether we could put it behind us. Then they ran around outside, playing with some marbles and sticks. They were waiting for the day to be over, because I had promised them they could go with Sophie and me to a birthday party at Chuckie Cheez. Now that's a post worthy of its own, but we went to the party. On the way home, Henry said, "I wish I were a grown-up right now and going to college, Mom."
I said, "Henry, then you wouldn't be a kid anymore and all your kid days would be finished." He thought about that for a second, at the most, and said, "Oh, then I guess I just want to wait."

Blue Saturday

My parents left today after four days in Los Angeles. I always feel blue and melancholy when they go. They live far away and when I dropped them off at the airport, Oliver waved out the window, weeping. I'm amazed that despite the distance and the lack of contact, my boys appear to adore my parents. I imagine the bond between them is just something ineffable, constructed of unconditional love, blood and air. Sophie loves them, too, I think.

 

I feel like it's Sunday instead of Saturday, heavy under the weight of their absence, guilty that I'm not enough for them in many ways and thankful that they made me who I am in others.

Peace

I snapped this with my cell phone at LACMA today. We went wandering in the museum and into this big sunny room. Statues posed throughout, white and ageless. I love their eyes, not seeing but ancient.

A Thanksgiving Poem

I was reminded of this beautiful poem posted on one of my favorite blogs, the spirit~of~the~river


Love After Love

The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other’s welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

-Derek Walcott

Gratitude

Thank God my husband is a chef because I just don't feel like cookin'

The Neurologist

Jean-Martin Charcot (1825-1893),the French Neurologist with Some of His Patients Depicted in the Background

Our Neurologist is new. She's got a strange name and a strange, beautiful face. She is young and thoughtful and would probably be my friend if she weren't The Neurologist. I took Sophie to see her today because I was up last night trying to keep myself calm while Sophie seized for the better part of an hour. At 2:30am. Now, for those of you unfamiliar with the hundred and one ways to have a seizure (and I do believe Sophie has had them all), the type seizure Sophie has for an hour isn't the kind of lose-consciousness, jerk and drool thing that most people think of when they think of epilepsy. The kind that Sophie has and that woke me up from a sound sleep beside her was a very physical, violent thing. I woke up because I took a hard right in the face. The seizures are spasm-like and happen one on top of the other and are interspersed by wild rolling and flailing. Her legs shoot out and her arms fly sideways. Sometimes she flips completely over and rolls onto her stomach. Like I said this goes on for the better part of an hour and in the beginning I just try to hold her and keep her and me from getting hurt. I usually then start to get frustrated and mutter some imprecations and then I start praying about mercy and then I usually try to breathe in and out (Thich Nhat Hanh says: Breathing in I calm myself, breathing out I smile) and then I sort of lie down next to her and hope for the best.

I'm thankful that when all this happens I'm with her, that she's not alone.

Then we go back to sleep.

And ironically, we had a visit to The Neurologist scheduled today. She didn't have much to say but nodded sympathetically and defined the type seizure it sounded like. Evidently, it's coming from the frontal lobe and I didn't catch the rest.

It looks like we're headed for an overnight EEG sometime in December. Just to see what's going on, she said.

Going on fourteen years and we're still trying to figure out what's going on. But the good doctor Charcot (see picture above) doesn't look like he's too happy with what's going on in neurology, either, and that was over 150 years ago.

Docteur, tant pis pour elle (roughly translated, it means Doctor, too bad for her, and it's an actual line from a memorized dictation in my high school French class).

Fruit

I'm plum out of words.

I'm supposed to be writing every single day the month of November but it's getting difficult. I guess I could write about the hours I was up with Sophie last night as she seized or just plain shimmied around her bed, but I'm sort of bored by it. Not bored -- yes, bored.

The circus is always in town around here. We're all just plum crazy.

An Adoption Blog

One of my writer friends, Denise, has a new blog. She's written a book about giving her baby up for adoption when she was seventeen and is waiting for word from a publisher. In the meantime, check out the blog and tell anyone you know who might be interested. Here's the link to her beautiful, clear writing.

Art

 

Last night I drove to Culver City to a gallery called indie collective to see a show of artwork by my friend Susan Arena. You can see her work here.

I don't own any "real" art. The kind that you really go look at and then buy. The "good" art that I do have has been either given to me or it's just something that I like and spend virtually nothing on. Like the above posted portrait. It's me when I was pregnant with Sophie. My friend, Jessica King, painted it in her apartment in New York City. I was so happy pregnant and remember sitting for long hours while Jessica dipped her brush in the ink and periodically brought us both tall glasses of mixed juices to drink. I remember thinking that she was painting my last face before being a mother. She told me that I had amazing pink cheeks. When my boys look at that face, they say that I look funny. Different. And I was.

I love Susan's art because it's got a haunting mix of the sweet and the ominous. For years I've wanted to own something by her. It was a strange night last night in Los Angeles. The air had suddenly turned cooler in the late afternoon, and the sun disappeared, melting into gray. By nightfall, the air was wet and misty and when I drove to the gallery I could hardly see through the fog. It seemed to be rolling in from the west, the ocean, and I was driving toward the coast. The gallery was tiny and fairly crowded and I talked a little to Susan and some of her friends. I kept staring at the row of paintings and works on paper, neatly arranged on one wall. I was drawn to their almost folkloric beauty but felt nervous around them, as well. I think the nervousness came, though, from excitement -- I knew I was going to buy something and knew, too, that I probably shouldn't spend the money.

I bought a painting that is pink and white and has a small house and flowers coming out of the roof and a tiny, ominous black fox on the pathway leading up to the door. Underneath it says SWEET. It's mixed media -- a bit of collage and fabric and paint and is about 12" square in size. I don't have a picture but when I get it, I'll post what it looks like.

I'm giving it to Michael for Christmas as a surprise. Home Sweet Home.