Just had to pick up a little something...

.

Left Austin on friday morning and a mere 7 hours later we were in Marfa for El Cosmico - a lovely weekend in the dry desert sun and dirt filled with friends, barbeque, and live music. The weather was glorious and the kids were in rare form - happy and enjoying the wide open spaces.

The kids were dying to go shopping at Prada so we just had to stop by and hit the summer sale. No really, for those that don't know - the Prada Marfa installation is "art". The sealed shop sits on the side of the desert highway and collects bugs and dust and amuses/confuses passers-by. Over the years it will continue to decay and sift back into the desert floor. Just 35 miles from the art community of Marfa (made famous by Donald Judd settling there in the 1970's), the Prada cube has been there for 2 years or so now. The story I love is that vandals actually broke in
and stole a shoe or two - they only display 1 shoe of each pair for just that reason, to deter thieves. I guess someone out in west Texas is walking around in an extremely well-shod left foot.

Meanwhile back at El Cosmico, others were camping in vintage trailers and tents but we were lucky enough to have the use of a lovely house in town. I couldn't really imagine camping with 2 year old, over-stimulated twins who were pumped up on crazy meal schedules, music until the wee hours and dogs everywhere! We settled in quite nicely to our minimalist abode and drank in the atmosphere of the West Texas light.

Don't tell me how sorry you are...

that my daughter was born blind. Tell me that you're amazed at how well she is doing and how silly she is when she giggles. Tell me what a good mimic she is when she 'burps' on command. Tell me how smart she is when I say "Zelda, let's count in French" and she says "Un, deux, trois". Tell me how proud you are of her fearlessness and determination and independence. Tell me that she is a good dancer. Tell me that you can see she is a wonderfully, loving child when she gives you a hug and a 'bisou'. Tell me that you are thrilled that she is doing so well. But don't tell me you're sorry. You had nothing to do with it. And I don't need your sympathy 'cuz Zelda is a 2 year old superstar.

Please honor our toxo babies...

Zelda and Creed will be turning 2 years old this week. They are thriving! But for the rest of their lives, they will have to deal with being born with congenital toxoplasmosis...and so does Fin. He's their friend that they met in Chicago through the Toxoplasmosis study. He was born with the evil parasite, too. His mother also unknowingly contracted the infection while pregnant. It really, really sucks! As parents, we want only the best for our kids, and if that means learning to live in Holland (see a few posts back) - by god, we'll do it!

Please honor our babies and go to Fin's website. His dad will be running the Chicago Marathon with 2 others to raise money for the Toxoplasmosis Study Group to help all of the babies born with this ridiculously strident infection.

Happy Birthday Toxotwins! And love to Fin and his parents! Please donate - pay it forward...www.thefinster.com

They're tryin' to make me go to rehab...

but I said 'No, no, no'...
This is currently Creed's new favorite song. He smiles, spins, moves his arms up and down and says "Noooo, noooo, noooo." Last week it was "Jump, Shake your booty" by Bob Schneider. This week it's Amy Winehouse. Itsy, bitsy spider - we are movin' on!

Of course, in a more serious mood, here's Creed challenging Nana to a game of dominoes:

Reasons why I am glad that August is over...

After the birth of the twins and living through their time in the NICU, their illness and surgeries, I swore that I would never wish for the passing of time. Each day needs to be cherished and treasured. But some days/weeks just plain suck - it's just that simple. Not to say that September will be any easier, here are reasons why I am glad that August is over:

- Business sucks and no one is spending any money this summer in my shops or anywhere else on the street.

- I am tired of seeing co-eds in flipflops with ironed hair and cell phones glued to their ears not understanding the concept of style or elegance. Please bring on fall and the holiday season!

- Zelda has had a snotty nose for the past 3 weeks. I'm tired of boogers.

- I have had absolutely no luck in finding a 2 day a week morning daycare in which to enroll the twins into a 'socializing' situation.

- The city as well as the attorney we have hired have still not resolved the stalled building permits issue concerning our house remodel.

- My dad had a massive heart attack but today he was discharged from the hospital.

So with that last reason, September is already better than August. So long summer...

Welcome to Holland

This was sent to me by a couple whose son was born with congenital toxoplasmosis. Read it!! It's appropriate for so many of us in so many different ways.

"Welcome to Holland"

I am often asked to describe the experience of raising a child with
a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this:

When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of going
to Italy."

But there's been a change in the flight plan. They've landed in
Holland and there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books. And you must learn
a whole new language. And you will meet a whole new group of people you never would have met.


It's just a different place. It's slower-paced than Italy, less flashy
than Italy. But after you've been there for a while and you catch
your breath, you look around.... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.

- Emily Pearl Kingsley

New flash: Zelda likes hills.

Apparently, according to our nanny, Zelda loves the hills at the park. She sits, she smiles and she rolls. Then, she does it again. I can't wait to see this. She is all about discovering her own unassisted movement but also, how she affects the movement of others. Another new favorite trick is to push us over and then pull us back up. Usually Evan will be sitting and she'll grab his shirt, smile and push. Then, when he's down, she'll pull him back up and repeat this several times. We'll say "Up" and "Down". She'll also stand between my knees and push them open and pull them closed. They say that toddlers like to perform repetitive actions in discovering their own forces upon the world. Creed will open and close drawers or doors. It's interesting that Zelda uses people.

It's difficult to photograph la petite Z because she often has her head down. But here's a photo from right after eye surgery - not too happy...but then, a few days later: woo-hoo! the towel dance!!!