Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.

Bias at the Country Club

Recently I attended a beautiful wedding at the Silverado Country Club in the Napa Valley. The ceremony was held under the Oak trees near the golf course and the bride was gorgeous. Everyone was beautiful and happy and wearing their best. In my hand-me-down designer dress and borrowed designer shoes I looked like just another well heeled member of the club. No one could tell the only thing new was my undies, right?

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When I first arrived at the country club, I parked my old Honda next to BMW’s and Mercedes Benz and walked to the front door of the mansion/club house. Walking across the green lawn toward the tall front doors I felt several people staring at me. What, haven’t you ever seen a woman in flip flops and a “Drama Queen” apron? The staff directed me to the suit where the bride and her entourage were getting ready. As mom’s best friend, my job was to keep mom calm and hand her tissues as needed. I watched the bride and her bridesmaids be transformed by an army of professional stylists. Amidst the chaos, the bride sat happy and serene, completely in control of everything. Amazing this was the same girl I met when she was 13 and surly.

Sipping expensive champagne, I kept my apron on so I wouldn’t spill anything on my hand-me-down dress and felt utterly out of my element. What the hell was I doing there surrounded by such wealth? Their jewelry was real and their shoes cost more than my monthly grocery budget. Everyone was staring at me, looking down their noses, aware my necklace was from Cost-Plus.

Or were they?

Were these smiling women really treating me like “the help”? Or was I so insecure being in a world I couldn’t dream of affording I assumed they disliked me? Did I dislike them?

Actually, every single person there was kind and considerate. When I ran out of champagne three bridesmaids asked if I needed more. The bride and her new husband were happy to see me. Everyone from the staff to the wealthiest guest was genuinely thoughtful and interesting. Not a single person treated me with contempt. And I liked everyone I met.

I walked in to the Silverado Country club assuming I didn’t fit in and would be ignored. I decided before I arrived that the people would be rude and I’d have nothing in common. Instead I met interesting people who were there because they loved the bride and groom. Just like me. We cheered and toasted and laughed and told stories together. The only one who thought I wasn’t good enough to be there was me.

 

This writer is tired of epic years.

As a writer, I should enjoy adventure, drama and changes. Good stories come from epic years, those years in your life when everything falls apart and is rebuilt, transformed, and reborn. Pick up any novel and there will be chapter after chapter of drama and cliffhangers.

Living an epic isn’t as much fun as writing one.

2015 was one of those years when I wondered if I actually was a character in a book. Was I up a tree having rocks thrown at me by an invisible writer? I had adventures, like going to New Orleans during Mardi Gras (talk about adventures!). I had bitter-sweet moments, such as when my daughter graduated high school in June. And there was great drama as my husband and I faced death with his cancer diagnosis. We laughed, we drank, we cried and fought and dreamed and hoped. I learned more about my self and how resilient I can be in one year than I had learned in 5.

This writer is overflowing with stories. I’d like 2016 to be a quieter year so I can write them.

From talking to friends and family, I am certainly not alone. 2015 tested everyone I know, some in just as epic ways as I. Illness, accidents, divorces and deaths happened with such frequency we’re all jittery from shock. Four people in my immediate circle of friends and family passed this year, including my own grandfather and my daughter’s grandfather. Cancer popped up in two acquaintances, and I had my own cancer scare when a tumor was removed from my forehead; Thankfully it wasn’t aggressive, but it was malignant.

I am sick of cancer and illness. I want my loved ones to be healthy this year. I want relationships to stabilize and love to grow. I want people to calm down and stop reacting in fear and anger. I want calm so we can heal from a too epic year.

Happy New Year everyone. May 2016 allow you the time to breath.

Queen Teen vs. The Communion Wafer

While my daughter and I were visiting family in Louisiana, we went to church. My husband’s family is very religious. I have no problem with religion; my daughter is baptized in the United Church of Christ. However, I’m not a Christian. Jesus was an extraordinary teacher and philosopher, but I don’t believe he died for my sins.

Regardless, we went to church with the family.

My nephew was an acolyte and he was thrilled to show me his long white robe and how  he lit the candles on the altar. Bouncing with excitement, he asked, “Do you want the pastor to come to you, or do you want Rhia to walk to the altar for communion?”

Because of severe ataxia, Rhia uses a walker to get around. Whether or not she should walk or sit for communion wasn’t my biggest worry at that moment, though. Instead, my brain anxiously hummed with the word “communion.” Communion? Who said we were taking communion? Isn’t it a “sin” for us to take communion? I’m not a Christian and Rhia has never been confirmed. My nephew is only 9; he has no idea what he’s talking about.

But before I could argue with him, my mother-in-law said, “The pastor should come to you. That would be easier for Rhia.”

Surrounded by so many eager, loving family faces, I nodded. “Of course.”

Communion. Again I wondered if I should protest, but how could I without embarrassing my mother-in-law? The pastor began the sermon, which was all about sin and forgiveness, so I bit my lip and worried what Rhia would do.

At last it was time. The pastor solemnly walked to Rhia and I with the communion wafers and wine, my nephew trailing him as sedately as a hyperactive 9 year old boy could. The pastor blessed a wafer and handed it to me. I turned to Rhia and signed for her to open her mouth. With scrunched eyebrows and narrowed eyes she opened her mouth and I popped the thin, white wafer in.

“It tastes like paper!” she shouted loudly, and spat it out.

After catching the soggy wads of wafer in my hand, I had to turn back to the pastor for the wine. The man was a pro; his expression never changed as he calmly handed me the wine to give to Rhia. Rhia took a sip and announced, “Tastes like my medicine.”

Trying not to laugh while hoping my mother-in-law hadn’t seen her granddaughter spitting out the body of Christ, I received the wafer and wine with the pastor’s blessing. “Is this gluten free?” I wondered, but decided it was better to just take the wafer and bow my head. When the pastor walked away I shoved the remainder of Rhia’s wafer into my purse. It stuck to the sides of my bag like paste.

Everyone else in the church solemnly went to the altar for their blessing. If anyone noticed how Rhia reacted, they were too polite to show it.

On the drive back to my in-law’s house, I wondered about the body of Christ crumbs in my purse. Could I just throw them away? I didn’t dare ask my mother-in-law. Instead I quietly tossed them under a tree when I got out of the car. Perhaps some birds were blessed that day.

Not Ready to Stay Goodbye to Jon Stewart

Jon Stewart has not left the Daily Show. I know because there are two more unwatched episodes in my Hulu queue. Therefore, Jon Stewart isn’t gone as long as I don’t watch these last two episodes.

Eventually Hulu will erase the episodes whether I watch them or not, so I’ll have to face the truth and say goodbye before that happens. But I simply can’t do it yet. I can’t face another presidential election without Jon Stewart skewering the GOP.

Jon Stewart is my hero and the official spokesman of my generation. Go ahead, laugh at my worship of Mr. Stewart. I’ll be in my room mourning the loss of one of the few sane minds on television. When I’m finished, I will watch those last two episodes while drinking a bottle of champagne and remembering how often he brought me back from utter despair over the political process.

Jon Stewart gave me permission to embrace sarcasm while still giving a damn.

My daughter turned 20, which wasn’t supposed to happen.

This week was my daughter’s 20th birthday, which when you’re battling Mitochondrial Disease, is a birthday hard won. My daughter, who I call Queen Teen (but can I still call her that if she’s not a teen anymore?), is a beautiful, friendly, stubborn young woman who has fought every single day to keep walking and keep learning. Despite being doubly impacted with blindness and deafness she has learned to read words and understand sign language. Doctors told us she wouldn’t make it to her teens. When she did she was diagnosed with “Mito” and given five more years to live. That was three years ago.

Right now, my daughter is singing “Let’s go fly a kite” and “Take me out to the Ball Game” at the top of her lungs. It’s horribly off key, but I love every note. I don’t know how long we will have together. Two years? Ten? You stop worrying about it after a while and learn to live in the present. “Be here now” is more than just a philosophy when your child has a life threatening illness, it is the golden rule to live by.

20. Who will she become now that she is grown? What will she want to do? I love watching and learning more about her.

I hate Chihuahuas. So I got one.

Chihuahuas are snippy, arrogant, loud, spastic, mean dogs. All they do is lounge on laps and bite people. But I fell in love with a little dog at the pound and was amazed when I discovered she was a Chihuahua.

We had mourned our Boxer dog for several months and felt ready for a new puppy. This time we decided to get a smaller dog so our daughter, who has special needs, could have a friend and help care for the puppy. My husband and I went to the pound and took a fluffy, funny, terrier type dog for a walk, but the dog wouldn’t stop barking. Deciding against a dog who never shut-up, we found two bouncy, playful, long legged dogs in a pen. One of them seemed sweeter than the other, so we took her out for a walk. The poor girl was so timid she didn’t know how to walk and insisted on being held the entire time we were outside. I wasn’t sure about this dog, but there was something about her that encouraged me to give her a try. The pound thought she was a terrier mix with “some Chihuahua.”

We adopted her and two days later I brought her to the vet for a check up. “What kind of dog is she?” I asked.

“She’s a Deer Chihuahua,” the veterinarian said.

“A what?” Did she actually say my new dog was a Chihuahua?

Deer Chihuahua. Image from the Central California SPCA

A Deer Chihuahua is a larger type of Chihuahua with long, deer like legs, long face and large ear. They are considered closer to the original size of the breed, even though they’re not as popular as the tiny, Tea Cup or Apple Headed Chihuahuas. In fact, Deer Legged are not allowed in dog shows or wanted by breeders. The Deer Chihuahua is the sweeter of the breed, with friendly, playful dispositions and boundless energy.

My friends think it’s hysterical I own a Chihuahua. I can’t help but laugh too. Me, lover of Boxers and other large breeds, scoffer of tiny dogs in purses and anything else Paris Hilton does, owns a Chihuahua. My daughter is delighted, and even my husband who dreams of owning a Great Dane is enraptured with our cuddly, goofy puppy. We named her Novella.

Novella is about 1 years old, but already has had a litter. She was a stray the pound picked up and from the looks of her, she probably escaped a “puppy mill.” Animal Shelters are full of Chihuahuas because people think they’re adorable little dolls, but when those dolls pee in the house or nip someone’s fingers they get dumped. Because Novella is the long legged Chihuahua and not the tiny type of her breed, she was probably not wanted by whoever bred her.

Happily, she’s settled in and no longer thinks she’s a lap dog. She’s a typical puppy, who right now is trying to eat the swing. Gotta go. There’s a torn up seat cushion flying across my yard.

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The Politics of Mardi Gras Beads

Not only was my trip to New Orleans during Mardi Gras fun and fascinating, it was also educational. I learned about hierarchy and power through the glorification of strands of beautiful, plastic, beads.

photo by Ronald Losure via Panaramio

Mardi Gras beads come with rules. The beads with the name of the Krew throwing them are more desirable than just plain beads, even if the plain beads are a more beautiful color. And the ones with medallions are even more valuable. People will brawl over a strand of gold beads with a Bacchus medallion. I kid you not. A woman gouged my hand with her long, lethal finger nails to snatch a strand of beads from me. But there is also a wild camaraderie in the crowds begging for beads and people will often congratulate you for  catching a good one. Someone draped with 20 pounds of beads is viewed with cheerful respect (25 pounds is not an exaggeration. Real Mardi Gras beads are heavy!). The Krews earn respect by the amount and variety of beads they throw.

The cost of those beads determines who gets to throw them. The wealthy can afford a seat on a float in a Krew while the poor either march in one of the marching bands or stand on the road begging for beads. Young, blond women get the most beads because most of the riders on the floats are wealthy, white men. Not all, and the Krews are becoming more egalitarian as times change in New Orleans. Sadly, I witnessed two young black girls, probably about 10, become heartbroken when they weren’t thrown beads like all the other, whiter children. I talked with their grandfather who explained how black people get fewer beads. He grew up in New Orleans and was now in his late 60’s; his entire family has dealt with the reality and now his granddaughters were feeling it first hand.

The power of the beads extends throughout the French Quarter. Bourbon Street is notorious for young women showing their breasts for strands of beads. This year, the police were writing tickets to anyone who bared her breasts, but women still did it. On one night, I stood on a balcony far above the chaos and watched the people beside me toss beads at partiers below. One young man had a huge strand of large beads and he waived it above the crowd like a fisherman waiving bait at a trout. A young girl stood below him and danced for the beads. He demanded she show her “tits”. She didn’t want to, but the young men she was with on the street coaxed and teased until she hesitantly lifted her shirt. Everyone cheered. The man on the balcony smiled and then tossed her a strand of thin, cheap beads, not the ones she had shown her boobs for. He laughed at her disappointed face. I turned to him and said, “Wow. You’re an asshole.” He called me a bitch. I walked away before I hit him with his giant strand of plastic beads.

The fight for beads was more intense this year because of the dockworker’s strike in Los Angeles. The city of New Orleans had ordered an extra shipment of beads from China, but the container holding millions of strands of beads was stuck in the LA harbor while the dockworkers and the port fought over a labor contract. That meant many of the people in the crowds were from other Krew’s hoping to fill up their bead stock before their parade the following day. No Krew wants to be known as stingy with beads. A group of women in matching yellow t-shirts held a large basket hoop with a box attachment to encourage bead throwers to aim for them. I was told they were from a rival Krew.

After four parades and numerous tours around “the Quarter” I had about 40 pounds of beads to haul home. I tried giving some away but was told by my husband (a native of New Orleans) “No!” Our beads were our booty, something to brag about and hang proudly in the window of our living room. The more you have, the better.

I wonder what will happen to the shipping container of beads now that Mardi Gras is over?

Life is lived one breath at a time

For seventeen years, I have followed a Buddhist path. I meditate, study Zen, read books written by great masters like Pema Chodron and Thich Nhat Han, and practice Mindfulness throughout my day. It is because of my practice that I am able to manage the chaos that comes from raising a child with disabilities. But despite all my practice and study and research, I had hit a spiritual brick wall. It was time to find a teacher.

Rev Zenju Earthlin Manual is the woman I consider my teacher. Ever since I heard her speak via a Zen Center podcast, I knew I had to meet her. I read her books, followed her blog, listened to all the teachings I could find, and finally contacted her to ask for a meeting. A few days ago, we met at her Oakland “Still Breathing Meditation Center.”

Rev Zenju Earthlyn Manuel

The first thing that struck me about Rev Zenju was her calming voice and smiling eyes. She seemed tired, but eager to meet me and talk. As soon as we sat, she offered me Jasmine tea and then she asked what she could do for me. I told her about my child, my struggles with grief and worry, how hard I’ve been practicing and learning about Buddhism because I felt it helped me take better care of myself and my daughter, and how I felt that I’d gone as far as I could on my own and I really needed a teacher to tell me what to do next.

She smiled and urged me to stop practicing.

Huh? I thought practicing was the most important thing.

Shaking her head she smiled again and said, “You’re too much in your head. You need to be in your body.”

Then she reminded me that life is not a journey or a path. The eight fold path isn’t a roadmap and there are no steps to master in some kind of enlightened sequence. I have spent so much time studying and practicing I’ve forgotten that the point of all that study is to live. Just live.

“Life is lived one breath at a time,” she said. With those words, a great weight was lifted from my chest. We laughed about the ways we both fight so hard to figure things out and make plans. You’d think living would be easy, but it seems to be the hardest thing for everyone.

Studying Buddhism and practicing meditation has strengthened and sustained me. I have learned how to balance the chaos and have compassion for myself. The basics are there and I know the path. Now it’s time to live.

Breath in… breath out… breath in… breath out…

I hope to return to “Still Breathing Meditation Center” each month and meet her other students. And I hope Rev Zenju doesn’t mind if I call her my teacher.

Still Breathing Meditation Center

“Dancing with the Stars” is the greatest dance porn since “Dirty Dancing.”

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It’s a new season on Dancing With The Stars, which means I am once again obsessing over Cheryl Burke, Valentin Chmerkovsky, Mark Ballas and Karina Smirnoff. I’m watching fierce dance routines and booing the judges as if ballroom dance was a football game. The “stars” don’t matter to me (how many “reality stars” are there on TV?). I love the Pros, the dancers who train, teach, choreograph, plot and scheme their way to the mirror ball. Why do I love this world of spray tan, fake eyelashes and glitter so much? Because Dancing With The Stars is the greatest dance porn since Dirty Dancing, and I love dance porn.

I admit I’m a little embarrassed by my obsession. I’m an intellectual feminist with a Master’s Degree and a publishing company. But here I am, every tuesday morning (I don’t have cable, so I have to watch it online,) applauding Emma Slater’s creative choreography. In the middle of the night, I’m scouring Twitter for #DWTS comments. I become frustrated that I can’t vote because I’m watching it the day after, and I know exactly how it feels to have to TiVO a basketball game because you couldn’t watch it live, and then have someone tell you who won.

Dancing with the Stars is my escape from the chaotic, stressful, overly-serious world I live in. It feeds my inner child who longs to be a ballerina. When I was little, I was obsessed with ballet and longed to be a dancer more than anything in the world, but we lived in Lake County, California, far away from any dance classes. So I practiced plies’ in my room while studying a book on basic ballet positions, eventually screwing up my knees. The love of dance never left me and I was finally able to take my first class in college at the age of 19. I danced in a troupe for five years and loved every minute of it, even choreographing three productions. Later, I choreographed two shows for children. Yet again, I live in a town with limited dance opportunities, and being a mom keeps me home. I channel my longing to dance into my writing and publishing, but the desire has never left. I’m too old to be a ballerina, but I know I would be awesome at Tango. All I need is a teacher.

Every day at 4:30, I dance to electronic music on Pandora. Dancing is how I de-stress. At the end of my work day, right before I switch into my mommy day, I shake my ass as fast as I can in my kitchen. My daughter thinks I’m crazy, but sometimes she’ll join in. Occasionally, a Tango rhythm will come on and I’ll pretend that I’m dancing with Maksim Chmerkovsky (and that man can dance a tango!).

We forget to play when we grow up, and before we know it the burdens of life drag us down like quicksand. It seems we only remember to be silly when we’re on vacation, or drunk. Why not do something ridiculous every day, like Tweeting about #DWTS or dancing for 30 minutes in your kitchen? Ridiculous is good for you. Silly lightens the load. Just ask any 10 year old practicing ballet moves all alone in her room. What is better than dance to make you feel alive?