La Petite Zelda is going to Paris...

...come and help us write our book about discovering the City of Light through touch, smell, taste and sound.
"La Petite Zelda goes to Paris"...is the story of Zelda and her brother Creed who helps his sister "see" Paris through discovery using all of her senses except sight. We'll visit Le Jarden de Tuileries, La Tour Eiffel, Notre Dame, the flea markets, the boulangeries, and so many other places. Close your eyes and imagine it...The book will be illustrated by Aaron Flynn - see an example of his work above! - and will be published in English, French and Braille.

I have just launched my kickstarter project so please click on the above link and see the story that we'll be writing while in Paris this summer - we need your support to make this dream a reality. For those of you unfamiliar with the Kickstarter program, it is a funding project to help artists bring their projects to realization. Each funding level will receive a gift from us, so please take a look...and merci, mille fois...

Cancer makes you do crazy things...

...so I got a summer job in Paris. I'll be teaching Fashion & Design to exchange students and the twins will come over there with me for 6 weeks or so.

Cancer is a funny beast. I have known it intimately. And for those who know me well, they are accustomed to my flights of folly. I have, since I was a teenager, or my parents could probably argue earlier than that, have figured out something I've wanted and gone about getting it. There was drawing a picture and getting it published on the cover of a book for the United Nations when I was 12, going to France for the first time when I was 15, spending every summer of my life in the mountains in a canoe, on a trail or hanging off cliffs until I was 24, deciding to become a teacher, going to grad school on a full scholarship, selling everything to move back to Paris for design school, making TV shows & movies, writing, public speaking, riding motorcycles, getting married to a not so good "was-bund" and marrying a much better one, having twins at 47, raising little kids in my 50's (one who is blind), returning to full-time designing...the list goes on and there are oh, so many things I CAN'T or won't mention (for now)...

But it's that doggone cancer that pricks you like a pin and says "Wake the fuck up and do more!" "What haven't you done in your life that you've wanted to do?" I have heard people say that they wake up after fighting cancer - they smell the flowers, they love harder, they acknowledge life and are more patient with others. I have even heard people thank cancer for opening their eyes and giving them a new lease on life. One woman once said something like she wished everyone she knew could have the mental and emotional effect of having cancer to experience how it changes you. Personally, I think that's a crock of shit and wouldn't wish cancer - even for its life-changing values - on anyone!

But I must admit, cancer - even in the tiniest ways - makes me do some things differently. Ever since I lived for all of those years in France, I've always said I would like to go back and spend a month there every year - especially now that Creed & Zelda are around. But, did I ever attempt a plan? Look into it? Do any research? Well, no - I would visit, attend shows, visit museums, have parties and delight in old friends... And then the other day I saw the post and with my "life's too short, eat dessert first attitude", I applied for the job: each day imagining a summer where I could teach what I love and spend time with my dear friends, introducing my kids to the city that is such a part of me, soaking up "ma dose" of inspiration, work on my book (oh! you didn't know that I was writing one?), and make new connections for my one-of-a-kind slow fashion movement.

So, here we go...do I have the money for the plane tickets yet? Well, no. Have I secured us an apartment yet? Well, no. What will happen at my shop while we're there? Haven't decided yet. And there's Evan...my husband: watching, wondering, silently shaking his head, waiting for the plan to unfold...and it will.

Less then 90 days and counting...on arrive!

Yoko, hello...

...yes, it was me...the crazy woman that had to thank Yoko Ono for her support of the Braille Institute free books for blind kids. When I heard that she would be here for SXSW, I only barely imagined just running into her with Zelda and introducing the two of them. But SXSW had come and gone, and there I was on a quiet Monday in my shop, chatting with Jerry, my neighbor. And then I saw her - crossing the street, coming towards the sidewalk in front of my atelier. She was so petite, in black and white, with her face obscured by a fedora & sunglasses - but I knew it was her. She didn't stop but kept walking on with her 2 assistants.

In a split second, non-thinking moment, I went after her, leaving my shop unattended. I caught up to them and passed them, and when her assistant spoke, I turned around as if to be surprised. "Oh, my...Yoko Ono." As I spoke - who knows exactly what I said except for "my 5 1/2 yr old daughter is blind and thank you so much for supporting Braille literacy" among other things. I saw her shoulders drop and relax as she listened and realized that I wasn't such a crazy stalker - only a mildly crazy one...she offered her hand to grasp mine, smiled and said to send Zelda her best wishes.

And then I moved on - but to where? I kept on walking to Jo's, met my friend Aaron at the front of the line and said - still reeling from my Yoko encounter - "I have no money with me, can you buy me a tea?, and here comes Yoko Ono." And then as we waited, there was a tap on my shoulder, and all of Jo's was staring, as Yoko wanted to talk to me again! She wanted to thank me this time, for stopping and explaining my situation and talking about la petite Zelda. She told me it "made her feel so much better." So, I wasn't such the crazy stalker, but the grateful mom that so appreciates every few months when we receive that Braille catalogue in the mail for a choice of free books, and on the front of the catalogue reads: with grateful support from Yoko Ono Lennon...

I have been away...

...physically, mentally and spiritually... life gets in the way. But so much is happening - especially in the lives and development of the Toxotwins. So, here it is, their recent photo taken during SXSW:


They are healthy but not without their interesting behavioral quirks. Their tenure at Ecole is nearing the end. Three years in a French immersion pre-school with Zelda splitting her time at a local elementary school for her various therapies: Braille, speech, OT, and O & M.
Creed is growing like a weed and imagineering stories beyond belief which usually include a girlfriend or two, parties in Mexico, building a house, his fireman friends and Clifford, the big red dog.

Today is my 53 birthday as we head out to the flea market fields of Warrenton/Round Top to see friends and pick through treasures.

more later...

Chicago, Chicago...

...so, I have written about this before: our trip to Chicago for the twins' participation in the Toxoplasmosis Study Group at the University of Chicago. This was our 4th trip up there to see Dr McLeod and her team in the past 5 1/2 years. Before I continue, however, I just need to say something about "Toxo". It sucks - it really does. Yes, I've said that about cancer. BUT, there's a big difference. Cancer can be treated and one can be declared "Cancer free." (Don't get me wrong, definitely NOT trying to make light of it...as I have known 2 people these past few weeks who fought their cancers to the bitter end...)

However, babies born with congenital toxoplasmosis will never be Toxo-free. They are born with that nasty little parasite swimming around in their eyes and their brains -thanks to transmission through cat feces (no, I don't have cats), improperly washed fruits or vegetables, or undercooked meats. So, if you have a cat - keep it inside. If you're pregnant, get tested. Cook your meats, wash your vegetales AND wash your cutting utensils. And if you're not immune, get treated.

Over the past 4 visits to Chicago, I have had the opportunity to talk to other Moms. None of them can remember being ill while pregnant or how they could have possibly contracted the parasitic infection. Some have kids with no symptoms, others have kids with varying degrees of effects on the eyes or in the brains of their children. But the one thing we all seem to have in common is guilt - even if we don't discuss it. How could we have let this happen? We were so careful when we were pregnant. If they were like me, having undergone fertility treatments, I was tested beforehand for everything - or at least, I thought I was. I often wonder if the twins will resent me when they learn more about this affliction. Will Creed be pissed at me because he can't play football or hockey with 2 shunts in his brain? Will Zelda hate me because I transmitted the parasite that caused her blindness?

Shit, I really didn't want to go "there". I think I have gotten off track from telling about our weekend. I'm stopping here. For now.

Watching a movie: one blind, one can see...

...so, we've taken to watching movies in our little house. I, for one, love crime TV, but Evan is always freaking out that Creed will see violence, blood and death and I guess he's right. So, on weekends, in the mornings, we watch cartoons on PBS and then usually a movie on a dreary cold day like today.

Creed is like his Dad: if there is absolutely anything moving on the screen, he is fixated. Frozen. Un-interruptible. (Is that a word?) "Creed, Creed, Creed!" I can shout. "Evan, Evan, Evan!"...it's the same non-responsiveness.

Zelda watches TV with her ears. She walks from her room, leaves her Lego's or books or beads - or brings them along with her - then stands right next to the screen and listens. It all depends on if she hears something sufficiently interesting or recognizable. She can sing with the Biscuit Brothers or recognize Elmo's voice and then will repeat or count along. She'll echo the dialogue and ask questions. "Mom, who's that?"

So, today we decided to watch the animated "Beauty & the Beast" (not to be confused with Jean Cocteau's "La Belle et la Bete", one of my favorite films). Both twins were on the "big bed", with Creed hunkered down to pay attention and Zelda sitting nearby with her "tickets". She likes to play with a stack of unopened mail - sorting it, holding it, counting it, etc. The movie begins and instantly Creed gives a dissertation on how Gaston is the good guy and the Beast is bad. So bad, that he wants to close his eyes and not see him. It's scary. Meanwhile, Zelda is happily singing and listening to the voices and songs. When they enter the castle, she shouts "They're in the bathroom" - because she recalls the echo of when we go into a public restroom. When the wolves are barking or the Beast is growling, she'll say "Mom, it's the dogs!" I try and describe the difference to her but the action moves fast and so does Zelda...she is bouncing, smiling, rolling on the bed, but always listening. I try and relay the plot, the characters and the action but to no avail. She's just not there yet...in terms of patience and wanting to understand. Nothing is scary to her and she can leave the action at any moment. In that way, Zelda is like me. I rarely get frightened and actually like horror films and I can also multi-task, knitting, emptying the dishwasher, sewing a dress, while a movie is on.

But the three of us do make it through the film: "tickets" and cookies all over the bed. Creed leaning on his elbows, riveted to the screen. He appreciates when the Beast turns from a "bad guy" to a "good guy". Zelda likes that Belle is pretty and that there were some songs. But alas, at the end, she still says, "Mom, can I NOW go and listen to Manu Chao?..."

Zelda "watching" a movie...

happy, happy 2011...movin' on

photo by Todd V. Wolfson