Sunday, October 31, 2010

Happy Halloween! Does Johnny Depp know he has a twin brother?

Johnny Depp's evil twin, Skippy             


For those who don't know, I am a HUGE Johnny Depp fan (since way back, not just since Jack Sparrow. I've even seen Dead Man and liked it). 
I wore this to a drag show and people loved it. "You look just like him!" several people said. It was eerie to see Johnny Depp looking back at me from the mirror. Kind of takes my Johnny adoration to a narcissistic level. 

Queen Teen, on the other hand, was pure girl.
Fairy Princess of the world!

Fairies and Princesses are her two favorite things, so we combined them this year. Thank goodness she didn't say Sponge Bob, her other favorite thing. I didn't have that costume stashed in the closet. 

She went trick-or-treating this evening... at night...in the dark... in unfamiliar areas... all things that would typically send her into a complete melt-down. Even when we had to walk in the street because her wheelchair couldn't fit on the sidewalk, she didn't panic. We went door to door for over an hour, far longer than I thought she'd last, and she remembered to say thank you and even looked at the person when they offered her candy. It was great! I will remember this Halloween forever because this is the one year we went trick-or-treating like the other kids. Funny how you don't realize you want something until it happens.

And now for my all time favorite Halloween joke, which I learned it in the 2nd grade and never forgot:

Why do witches ride brooms?

Because vacuum cleaners are too heavy.        Bwahahahahahahahahahahaa

Happy Halloween.

Wednesday, October 27, 2010

But it's Wednesday! Laura comes on Thursday!

Me - "I'm going to pick you up from school today and then we're going on a walk with Laura and your friend Eden."

Queen Teen - (scowl)

Me - "What?"

QT - "I don't think I like that."

Me - "Why?"

QT - "I just don't."

Me- "You don't want me to pick you up from school?"

QT - "I don't know."

Me - "You don't want to go on a walk with Laura and Eden?"

QT "No."

Me - "Why? It will be fun."

QT - "No it won't."

Me- "But why? You like going out with Laura and you haven't seen Eden in a long time."

QT - "Because I only go out with Laura on Thursday."

Me - "You can go out with her twice this week. Today and tomorrow, on Thursday."

QT - "No."

Me - "No?"

QT - "Today is Wednesday. I don't go out with Laura on Wednesday. I only go out with Laura on Thursday."

Me - "This is an extra special, fun trip with your friend."

QT - "I don't think I like that."

Me - "Well... I'm still going to pick you up from school today."

QT - (deeper scowl) - "Hmph!"

Me - (under my breath) "This is going to be fun."

Tuesday, October 26, 2010

How do Working Moms do it?

My butt is officially whipped. I started my internships in September and have come crashing into the middle of that work/life balancing act. How do working moms do this? How do you work full time while raising children, not to mention keep up with laundry, dishes, groceries, bills, housework and still maintain some kind of relationship with your husband? I'm not working yet, but I might as well be. My crazy life has been forced to conform into another person's schedule and I am losing my mind!

I've worked in the past while raising my daughter, but all of those jobs were flexible. Even when I was a program manager at a non-profit, I pretty much made my own hours and if I had to work from home due to a sick child, I could. But now that I'm working in the field of O and M, I'm dealing with a whole new set of expectations and deadlines. School districts and the Department of Rehabilitation have strict regulations and both are working on shoe-string budgets. Everyone needs it done NOW, and heaven forbid if I miss a day due to illness or child care problems. I feel stretched to my limits, physically and mentally. And when I go home after working all day, I have a needy, still dependent Queen Teen to feed, bathe, spend time with and then send to bed.

That's the heart of the problem. Queen Teen is 15 but is developmentally about 11. Physically she requires a lot of help and still relies on me to provide the majority of her security and emotional needs. I rarely have down time; when I'm not working, I'm caring for a severely disabled child who requires 24 hour care. Rick is fabulous and does his best, but I am the center of Queen Teen's world, and will probably be for many more years.

It's frustrating because I want to learn more and work more and expand my horizons and perhaps even get my PHD (someone can kick me now and remind me how stressed out I am and NO I do not need any more years of school!). I want a steady income, health insurance, a 401K and retirement, all things I have never had (I'm 43! I should have some kind of savings for when I'm 70!). To get those things I need to work full time.

I can not work full time. Not now, anyway. Instead of looking for full time jobs, I'm considering being an independent contractor so I can go back to making my own schedule and having more control over my time. I need the flexibility to give my daughter the care she still needs from me. I have to be full time mommy a little while longer.

But I'd still like to know, how the hell do you moms with full time jobs do it!?

Wednesday, October 20, 2010

Holy Cow! What happened to October?

Is it really the 20th already? Last time I looked, it was October 9th. Since then I've been focused on my internship and my Master's Exam, studying like a fiend when I wasn't teaching visually impaired people, driving too many hours, or keeping up with Queen Teen. Plus, there was a Book Expo for my press in the middle of all that, and a book reading with two of my authors (check out my press blog Medusa's Muse for more on those events). So much happening, so much busy-ness, so much learning and growing and exploring that I'm feeling breathless. Really. I need to sit down and rest for a few days.

But no. No rest for the wicked, or crazy in my case. Although I did find a glimmer of sanity in all that chaos. Since my internship is going to take longer than anticipated and I won't graduate this semester, I postponed my Master's exam until Spring. Suddenly a huge weight disappeared from my chest, plus I had time to tackle that gigantic mountain of laundry in the hall, half blocking my bedroom door.

Alas, there was one casualty this month.

My house plants may never be the same.

Saturday, October 9, 2010

Boys

After observing Queen Teen in class at the high school, I discovered one very important fact: Queen Teen is popular with the boys. They watch her walk by with curiosity and a little bit of longing in their eyes. They have stammering conversations with her that involve them asking questions and then staring at their feet while they wait for her to reply, which she usually doesn't do. They look for her in the cafeteria and then maneuver for the closest spot beside her, but not too close because they don't want to crowd her (she hates that). Primarily, I'm talking about the boys in her SDC program, but I also saw some of the boys in the general campus population secretly checking her out, and it wasn't just because she was in a wheelchair.

Queen Teen is beautiful. It's not just me saying that, either. She has dark hair and dark blue eyes, pale cream skin and naturally red lips, long limbs and a smile that can turn a teen-aged boy to jello. And although she is still a little shy and has a hard time hearing when the boys are talking to her, I've watched her slowly become aware of the power she has over the opposite sex. She smiles shyly and actually bats her eyes. I'm not sure she really understands what's going on, though. She simply seems to enjoy learning to flirt.

There is a boy at school who hunts for her in the cafeteria every day and then glows with pleasure when he gets to push her in her wheelchair. Sometimes she lets him, sometimes she doesn't. It's always her call, and I think he lives for the moments she turns to him and says with a smile, "You can push my chair." Another boy asks her every day if she'll come to the gym to watch him shoot hoops. She rarely does, but on those few occasions when she does appear, he practically does cart wheels, he's so excited.

And now I have the task of trying to decide how much I need to explain to her about what all this male attention means. She still seems a bit oblivious. To her, boys are "silly," and the ones who give her extra attention are even "sillier." How much does she understand about flirting and relationships? I've been waiting forever for her to ask me questions about boys and sex and where babies come from, but she never has. It looks like I need to start asking her the questions.

It's fun watching her blossom and begin to flex her flirting muscles. She's stunning. Gorgeous.

In fact, I'd better go get a shot gun and a chastity belt. Or I wonder if there's a nunnery I can send her to?

Monday, October 4, 2010

The Giants are in the Playoffs! And you can all thank me

(image from Gear up for Sports)

For the first time since 2003, the San Francisco Giants have made it to the playoffs. This is also the first year I attended a baseball game. Actually, I've been to a few games in my life, mostly high school and amateur softball teams. My dad was on a team when I was a kid called "The Fat Vikings." They were really called something else, but the winery's logo that sponsored the team was "FV," so that became their name (I wonder how the winery felt about that?)

I saw the Giants vs. the Brewers on Sept 19th at AT&T park with my two good friends, Jody and Patrick. We sat in the Club section where the seats have backs and it's a short walk to get a beer. And speaking of beer, they now serve Gluten Free beer at the ball park. Say what you want about "yuppie" ball parks, it made my day to drink a real beer at a real baseball game. Wearing the SF Giants cap and shirt my friends had brought me, I felt fully "Giantified." 

The ball park is gorgeous, with towering rows of seats to the West and South, and shorter bleacher seats to the East.  From our seats we could see the enormous Bay Bridge and boats gliding slowly across the the cool gray water of the San Francisco bay. The sky was gray, but the grass of the field was brilliant green.

image from http://sanfrancisco.diarystar.com/venue-reviews/
At first, I felt pretty odd sitting in the ball park with my beer and Giant's gear. I never watch games on TV and didn't know who any of the players were. Buster Posey looked like a 16 year old kid who should have been in Sunday school, not a baseball game. And when people started booing for Juan Uribe I thought he played for the other team and somehow I'd missed the change in the inning. Bottom of the 2nd? Second what? Why was it called bottom and top? I know this is San Francisco, but that's ridiculous.

Patrick and Jody were patient answering my questions (or at least they hid their laughter), and eventually, the game started to make sense. When the Brewer left-fielder made an incredible catch in the first inning I clapped with the rest of the fans, understanding that sometimes you have to cheer for the opposing team when they play that well. But when Sunday school boy Buster Posey hit a home run early in the game, I cheered even louder. This was my team, baby, and we were winning!

Patrick, Me and Jody, and the Giant Orange hand of beer goodness
The Giants did win that game, going on to battle Chicago and then San Diego and making it to the playoffs. Jody sent me a message after the Giants won yesterday. "You're good luck, Terena!"

Yep, all baseball virgins are good luck.

Now I understand why people go to ball games. It's like a giant party with a game to tie us all together. You forget your own problems and the problems of the world and just focus on the simple game of baseball. When the game is on in a grocery store or my car radio I pay attention, wanting to hear the score and find out who's hitting, who's pitching, who struck out. I doubt I'll ever spend time glued to the TV watching the game like my grandmother, but now that I've seen the Giants, they feel like my team, and I want to know how they're doing.

And now a word from my favorite ball player, Ebby Calvin LaLoosh. A good friend of mine used to say, "This is a very simple game. You throw the ball, you catch the ball, you hit the ball. Sometimes you win, sometimes you lose, sometimes it rains." Think about that for a while.


Sunday, September 26, 2010

MRI and Test Results

I got a call from the genetics researcher at Stanford who has been working hard to unravel the mystery called Queen Teen. A few months ago Queen Teen had blood drawn while under anasthesia for an MRI. The researcher had uncovered two new tests that might pin-point the cause of Queen Teen's shrinking cerebellum, hearing loss, and visual impairment. The hypothesis is that she has a Mitochondrial Disorder and there is some evidence to support that, but so far no one has been able to diagnose a specific disease.

They couldn't do it this time either. As usual, the tests came back "normal."

The researcher sounded apologetic about the results, but I wasn't surprised.

"It's what I figured would happen," I said.

"She's still part of the research study, and they can examine hundreds of strands at a time instead of just a few," the researcher said, trying hard to give me hope. "If they find anything, I'll let you know."

"Thanks. I know this isn't your field, but is there any news about the MRI."

She said she thought that I would ask her that question, so she was prepared. The MRI report stated that there was no apparent degeneration as compared to her last MRI, which means it looks like the damage to her cerebellum has slowed down. Yes! When we go to the neuro-genetics clinic in November we'll be able to find out more specifics, but for now the outcome looks good. Why has the degeneration slowed or stopped? Is it the CoQ10 and other amino-acids? Maturity? Has the disease reached a plateau?

So many questions and probably never any real answers. It's okay. We're used to it. Sometimes I think it would be nice to have a clear diagnosis, one that would fill in the blanks and tell me what we're dealing with and what will happen. It might make it easier to prepare. But on the other hand, I'm glad that everything is still up in the air. We just take it a day at a time.

Thursday, September 23, 2010

In other non-Burning Man news

I officially started my internship last week at the Earl Baum Center in Santa Rosa, and though I can't go into details about clients, I can say that I'm learning a lot in a very short period of time. My master teacher is an alumni of the SFSU O and M program, and had all the same teachers and classes I did. She too survived crossing 19th Avenue under blindfold, and now here she is working with clients, helping them with daily living skills, cane skills and street crossing. Gives me hope that soon I'll too have a case-load of students and my office in my car.

It's been challenging though. I'm driving three to four hours a day, from my home and then to the various client's homes throughout Sonoma County. The schedule can be hectic and some days we skip lunch trying to get to everyone. My master teacher tries hard to accommodate my needs, but a lot of the schedule is driven by client availability and location, so there's only so much she can do. I'm beginning to realize just how hard it's going to be juggling Queen Teen's continuing needs and a full time job. Will I be able to pull this off? It's looking more like I'll need to work part time for a while, with one day a week devoted to Queen Teen. How do other parents work and care for a child with disabilities? Maybe I'm just a wimp.

At the same time, I'm studying for my Master's exam in October, and my Certification exam in January. I should know all about Orientation and Mobility, right? Then why does it feel like I've forgotten every term every taught to me. Eye anatomy; common eye-conditions; the difference between a landmark and a clue; the necessary parts of a functional assessment; what color tint of shades to use for Macular Degeneration. All that info is in my brain somewhere, but I'm having to re-read much of the readings from my classes to make sense out of it.

But when I work with a client, the info appears. Instinctively I know how to teach orientation skills to a client. I may not remember all of the visual effects caused by Diabetic Retinopathy, but I do know how to teach, and I figure the details of what I learned in class will coalesce into retrievable, logical sense in my brain. Just takes a little time, and study.

Queen Teen is thrilled that I'm home evry night for dinner now. No more staying in San Fran far away from her. But I miss my weekly trips to the City by the Bay, and miss seeing my friends regularly. The City charges my batteries, so to speak. I need to plan some trips for fun.

Well, gotta get back to work. My master teacher will be here soon and then we're meeting a client. Thanks for hanging in there while I wrote about Burning Man (which everyone should go to at least once in their life).

Monday, September 20, 2010

Adventures at Burning Man - Heading Home

The man had burned; time to go home. Because of work, I couldn't stay for the Temple burn, so I quickly packed up and departed Black Rock City. I was ready. I had seen more beautifully marvelous things in four nights than I have seen in 40 years, but you can't survive on only water and creativity. Eventually, you have to come back to Earth, wash off the dust, eat some real food, and reconnect with the tangible. The human body can only dance under the stars for so long before it needs a full night of sleep. My body was going through moisture withdrawals and dreaming of pizza.

It is amazing how much dust people pack out with them every year, so much dust I imagine the Black Rock desert sinks an inch after every Burning Man. If everyone shook just the dust from their tent into one big pile we could create a hill as tall as the Man itself. I gave up trying to keep the dust out of my van and just shoved everything in, then tossed a bag of garbage on top. There's no garbage service at Burning Man; everything you bring in must be hauled out, coffee grounds and cigarette butts included. The tiny desert towns on the road leading back to Highway 80 and Reno make a tidy sum collecting our garbage for us as we pass through, and the local schools make enough money washing the dust from our cars to keep their sports programs alive.

My dad checked the fluids in my car once I was loaded up and ready to go, then we hugged goodbye. He was heading North to Oregon while I aimed West to Northern California.

"Thanks for sharing this with me, darlin," he said. "You're a citizen of Black Rock City now."

I grinned. "Love you, Pop." We hugged again, suddenly sad because we might not see each other for another year.

It can take two or three hours to get out of the City because 50,000 people are trying to exit through one narrow gate, but I lucked out and beat the rush, leaving the playa in only an hour and 15 minutes. Then I drove the long, two lane road through the high desert, stopping in Gerhlach where I paid $5 to drop my trash. It's good to support the local economy, especially since they've just let us throw the biggest party in the world in their back yard. The locals smiled and waved, seeming happy we were there. A blond woman in a "Wallace Construction" t-shirt asked, "Did you have fun?

"It was great," I said.

She smiled. "I'm glad you had a good time."

The road felt like it had grown longer and the wind kept trying to push my mini-van back the way I'd come. I stopped for a coffee at an Indian Taco stand, then kept going. I had a 12 hour drive ahead of me, but first, I had a pit-stop in Reno.

Gitta lives in a small, 1930's bungalow across the river from the Casinos and when I'd asked if I could stop at her house on the way home, she was happy to oblige. As soon as I got there, her husband made me a snack and a cappuccino, then I took the most wonderful shower of my entire life. Every pore on my skin opened wide to gulp down the delicious water. I washed my hair twice, loving the feel of soap sliding through clean hair. I will never take bathing for granted again. After that, I wolfed down the Gluten Free lasagna she had bought me, even my toe-nails feeling hungry.

Gitta's daughter gave me the grand tour of all her toys and then Gitta gave me a tour of her garden. One of the best things about my Burning Man trip, besides Burning Man, was spending so much time with her. We've been friends since the 8th grade, but now we live 10 hours apart and rarely get to see each other. It was 4:00 by the time I got ready to leave, but I didn't want to go. I miss her already.

At last, I headed home, and this time when I climbed the Donner Summit my car didn't overheat. Just after one AM, I rolled into my driveway and then climbed into my soft, clean bed with the crisp sheets, eventually dreaming of fire dancers, dust devils and a million gleaming stars over a black land.

Friday, September 17, 2010

Adventures at Burning Man - Burn Night

The dust storm blew all night, with only a small break in the morning, long enough to use the toilet and boil water for coffee. Then the wind blew hard, throwing sheets of dust against our camp's shade structure. It reminded me of sheets of rain in a storm, gathering like a wall and moving fast across the city, with an occasional break between gusts, just a hint of blue sky before the sky turned beige.

You have two choices: you can hide in your tent out of the dust storm, or you can grab your goggles and face mask and deal with it. I chose the latter.

dust storm on the playa
Barbara and I met for coffee at 11:00, then hopped on our bicycles to ride out to the Temple. We stuck close to each other and stopped whenever the dust clouds got too thick to see more than 10 feet ahead. When there was a break, we rode on, stopping again when the view was obscured. At last we made it to the Temple where Barbara left items from two more of our friends, adding them to the cluster I'd left earlier. We walked around the Temple paying our respects. The grief in the Temple had grown since first I came and I fought tears, not wanting a runny nose inside my face mask. There were thousands of photographs, some of children. Several old wedding dresses flapped like antique lace flags. A fountain gurgled happily in defiance of the parched air, a memorial for three mountain climbers lost in a snow storm. An Asian man with a Buddhist meditation bell walked around the temple, rang his bell, bowed, chanted, and then moved on, blessing all the people at the temple, living and dead. We bowed to him and he blessed us, then smiled warmly, as if the sadness of the Temple couldn't reach him.

Barbara had to work that afternoon, so she rode back to Center Camp while I decided to ride East to the Dancing Woman. Keeping my eyes on tall, steel flowers in the distance, I rode until they were obscured by the dust. I waited, hunching my shoulders from the sting of the blasted dust, while minuscule flashes of light appeared in my vision. Was it caused by the particles in the air reflecting sunlight, or created by my own eyes? Once the dust cleared enough to reveal my landmark, I rode on, hopping from landmark to landmark until I reached the Dancing Woman. She was just as beautiful in the daylight, her metal mesh skin glowing white in the sun. From there, I rode due East until I reached the city at 2:00 and Esplanade.

I rode through the city, directly into the wind, the streets slowly clogged with thick dust making cycling that much harder. Worn out after only a few blocks, I got off my bike and walked. It was a good two miles to home, if not more, and I had to conserve my energy. Plus, I liked walking; I could explore more on foot. But after a half mile I was so tired I began searching for a place to rest. I turned a corner onto a street that provided a bit more shelter from the wind where I passed a woman holding a spray bottle.

"Would you like a lavender spritz?" she asked.

"Yes, please." I pulled off my goggles and mask and she sprayed me all over. Then she said, "If you have time, come in for a lavender treatment."

I looked at the tent and realized I'd found the elusive Lavender Camp. This camp is famous for their lavender treatments, which involves lying on an air mattress in the shade with a lavender eye mask while someone sprays cool lavender water above you and another person massages your head with a vibrating scalp massager. Absolute heaven, especially after riding several miles in a hot dust storm. It was just what I needed to get home. Feeling energized, I hopped back on my bike and rode home.


By Saturday, everyone is tired. Add a 24 hour dust storm and the anticipation of "the Burn" and there's bound to be drama. I could feel the intensity of the emotions in the city. There was even a minor blow up in our own camp. The Boonville camp had a major blow up. My father, Barbara and I joined them to ride out to the Man to watch him burn, but we were late because of the drama in their camp. Just as Barbara and I were thinking we should walk, the Boonies poured into the car and we drove off to join the massive party on the playa.

my dad


If there are 50,000 people in Black Rock City, then there are at least 40,000 on the playa when The Man burns, gathered in a huge ring around The Man and held back to a safe distance by the Black Rock City security team. When we arrived, Barbara and I jumped off the art car and dove into the crowd, but first I hugged my dad. He decided to stay with the Boonies. "Have a happy burn, and stay together," he said. Barbara and I pushed as far forward as we could to get a glimpse of the 1000 fire dances who perform before the man burned. When the dancers stopped and moved away, the anticipation grew as 40,000 eyes stared at the man for the first hint of flame. Suddenly, fireworks exploded around the man, shooting into the sky and exploding into green and gold shimmering stars. The fireworks grew in intensity, until at last the first flames appeared on the man. People were screaming, laughing, cheering, dancing, drumming, making out, talking loudly. The wind grew stronger, as if it were being sucked into the flames, making the man burn hotter, brighter. Dust slammed into us, so thick that there were times even the flaming man was slightly obscured. And then, with a twist of the four story frame, the man collapsed and fell into a pile of wood and coal.

Every art car in the city seemed to be on the playa right then. Barbara and I wandered amongst them, following the pretty lights, and soaking in the chaos of The Burn. Tens of thousands of peoples were dancing and drinking and celebrating, despite the dust storm that seemed even stronger. Suddenly, the noise and press of humans became suffocating. Feeling like a trapped animal ten seconds from chewing her own pay off, I yelled for Barbara, "I'm freaking out." She took my arm and guided us away from the chaos, back to the city. Center Camp was quiet and cool since most of the city was out on the playa. We opened the bottle of champagne our friend Marnie had given us and shared a toast. Slowly my claustrophobia vanished, replaced by a calm eagerness to see more. A woman appeared, set up her paints, and began working on the painting near where we sat. She was so intense, her work so beautiful, Barbara and I were mesmerized watching her.

Thirty minutes later, we walked back to the playa. The crowds had disbursed and the dust storm had suddenly stopped. The sky was black and filled with stars again, the night warm and the gentle breeze kind. We walked to the pile of embers that was all that remained of the once gargantuan man, the heat still intense. People were gathered around, many nude, and Barbara said they would stay there until the very last coal was out. Barbara and I walked several miles that night, back and forth across the playa, from 1:00 to 10:00, resting once in the Temple to raise a toast to our friends and drink more champagne. At night, the Temple is lit from within by amber lights, creating a feeling of warmth and peace. Back in the city, we stopped at a huge disco and danced to techno while watching fire dancers. There was a large container of flaming water set beneath a giant flaming ball where people had gathered to manipulate the flame. A man handed me his lighter and asked it I wanted to try. I lit the lighter and ran it across the top of the water, which created a long line of flame, burning my thumb a little in the process. But it was beautiful to watch this dance between fire and water.

dressed up for The Burn, on a very dusty night

I think Barbara and I walked 5 miles that night. I didn't want it to end, there was so much to see and do that night, but my body was tired and I had to get up early to drive home the next morning. Barbara said she might stay up till dawn simply because she hadn't done that yet, plus she wasn't leaving until Monday. We walked back to my camp so she could get her bicycle and then hugged goodbye. I watched her ride off into the darkness and wondered what further adventures she would find on Burn Night.