Showing posts with label music. Show all posts
Showing posts with label music. Show all posts

Tuesday, April 7, 2009

Le Fabuleux Destin de Zelda Nicolette...



...cue the circus calliope-like music:

La petite Zelda is 3 1/2, adorable, feisty and fearless. She awakes each morning, sometimes in our bed and sometimes in her own. No matter, as she is always happily sporting a tangled mess of blond hair, closed eyes and a huge grin. She's always silly and chatty in the mornings - eager for Cheerios and a specific choice of music. She spends each day at Ecole, has 5 therapies a week: speech, pre-Braille and O & M. She can count in French up to 20, likes to take walks, and loves her music.

As of now, we don't know what Zelda can see...since she was born, the question has remained unanswered. She has had at least 8 eye surgeries (I've lost count) - all in California. She has had a lensectomy, a few vitrectomys and several retinal reattachments. Sometimes the drs say she may have light perception in her "good" eye, the right one which is smaller. They say there is most likely no sight in her left. She rarely opens her eyes but she does understand what to do when I ask her to do so. When she does open them, they are a piercing blue and each goes in a different direction off to the sides. I guess I figure that if she was seeing anything she would want to keep her eyes open all of the time. Luckily, Zelda has excellent "mapping" and traveling skills. She obviously knows our little bungalow inside and out but then there's the neighborhood: "I want to go outside", she says. And from there, she'll take her long white cane, head onto the porch, down the concrete steps (no helping please!) and off into the direction she has chosen. Down the driveway, down the hill to my shop, up the sidewalk, over to the gate and down the steps, off to Jo's for coffee...she'll tell you. She uses sound, echolocation, feels for curbs with her cane, often bends over to touch the terrain with her hands.

Yes, la petite Z is amazing and a joy but this is not to say that life is always peachy here on Nellie Street. Zelda can be pissy and determined and an absolute tyrant at times. She has learned to scream, throw things, refuse to speak or apologize, and manipulate others. If Creed leaves the tricycle in her path and she trips on it, she becomes the angriest 3 year old you'll ever encounter. There's no pacifying her. She's pissed. She has a way of charming you and driving you crazy at the same time. She'll repeat the word "Mommy" incessantly until I want to pull my non-hair out of my stubbly head. Somedays she'll only want to eat O's and drink tea...other days, she'll throw her lunch tray and get sent home from Ecole. Yet, she's silly and giggly and smart as a whip.

Zelda's new games include opening the refrigerator door and standing there with it ajar while she takes one bottle out at a time and places it on the kitchen counter. With each bottle she'll ask Daddy, "What's that?" "Maple Syrup" "What's that?" "Ketchup" "What's that?" "Soy sauce." Then, one at a time, she'll carefully return each bottle to the approproprite shelf, while naming the product. And repeat. Our energy bills are soaring. now it's time for me to start labeling the groceries in Braille. She also likes to go into the pantry and look for specific items: O's, cookies, Pirate Booty, veggie chips, etc. - note to self: also need to Braille those items. Zelda is way into loading her CD player with her music of choice - need to Braille those, too - and she tortures us while experimenting with the volume control.

People that meet her say that she's magical, others like her lips, or marvel at her agility. Mostly they're curious. It's funny though, as a parent, you want your kids to feel loved, feel happy and feel special - but not too special. Some of us just want them to know that they're just like any other little kid...

Now it's time to go and start brailling everything in the house...

Sunday, March 22, 2009

Rollercoaster of Pain...

...no, it's not a band featured during SXSW. It's how I feel. After my 1st Taxol experience this past Tuesday, I felt great despite the long day. And the next day, I felt great as well. I painted my store window, I received merchandise and talked to customers. When the nanny arrived, Evan and I got dressed up and went to the Austin Music Awards. Good music, good people...our friend Alejandro Escovedo was receiving several awards and we love hanging out with him, his wife Kim and the rest of the entourage. But as the night dragged on, my skin started to hurt. Yes, you heard me correctly. First in my abdomen, then my thighs, the backs of my arms, my calves and so on...if I touched my skin, it ached. So very strange...The next day I awoke and the soles of my feet burned as I walked to the bathroom. The bone pain had begun. As recommended, I had been taking 2 Aleve every 8 hours or so, but now I added some more serious painkillers. Thursday was an aching, on and off painful day. I cloistered myself in my studio and worked alone. Friday was even worse but I did try and engage myself at the shop. That night was Alejandro and his orchestra over at the San Jose...a beautiful night outdoors and the kids had been waiting for this show all week. Luckily we avoided the crowd by sitting next to the stage with Kim, Mickey, Laura, Michelle and others. Creed got to experience his first real adult concert up close and in person. Despite their past-bedtime exhaustion, he clapped every time and Zelda sang along to the songs from "Real Animal". (On the other hand, I took them to see Exene Cervenka at Yard Dog earlier in the week and Zelda simply said "Turn it off.") However, with each passing day, more music and a steady stream of customers at the shop, my fatigue increased.

Today, I am so sore and in bed. Evan took the twins to a guitar show this morning and Jason took them to a poster show this afternoon: the final events of their musical spring break of SXSW. Tomorrow they return to Ecole. And tomorrow I hope this pain will dissipate. I find suddenly that the joints of my fingers will have sharp pain. It will go away and then my hip will ache. I'll re-adjust my position and the fronts of my calves will feel like someone is sticking needles into them. My lower back will be sore. Next I'll writhe in bed to lessen the total body pain. Then it slows down and I'll get up for a bowl of soup. Up and down, turning corners, moaning and groaning and holding on...the roller coaster.

And tomorrow, I'll go to be fitted for the Breast Cancer Resource Center's annual fundraiser. It's an Art Bra runway show. Don't know much else about it but I guess I'll be on the catwalk strutting bald this spring...

Saturday, February 7, 2009

Playlist...department store mannequin...

So, la petite Z has a play list. She can name Sting, Beck, Spoon & Alejandro Escovedo on KGSR in 3 notes or less. We're going to make a lot of money off this kid if "Name that Tune" still exists when she's older. She can distinguish between The Police and new Sting. She's picky about her 60's R & B, 70's disco and dance hits of the 80's. We bought her one of the no-tech reverb microphones that she'll sing into like an echo chamber...these are her favorite feel good tunes of the moment:

- I Got You (I Feel Good): James Brown
- Message in a Bottle: The Police
- You got yr. cherry bomb: Spoon
- Don't You Want Me: Human League
- Sister Lost Soul: Alejandro Escovedo
- Le Freak: Chic

As for me, the velcro stubble is shedding. After the haircut of last Friday, my five o'clock shadow was starting to reappear and I was getting pissed. It's itchy, it's sticky and it hurts on my pillow. Funny thing, the other night, I got up to pee, half-asleep and as I got back into bed, I instinctively went for my long hair at the nape of my neck to brush it up onto the pillow.
I was just in the shower at noon and felt the water streaming down my lonely skull. And when I emerged, I looked at myself naked in the mirror - like a department store mannequin. Long neck, skinny shoulders, small breasts & waist and bald. Spray me in white plaster and set me in a vitrine.