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

There's something about Zelda...

...so Christmas has come and gone, not without a visit to the ER. Just 3 days before the holiday, Zelda had a seizure - there were good things and bad things to come out of it. I can't help but think what a life without toxoplasmosis would be like for her. Creed is far less affected by the parasite in his system. He has had only one seizure in his lifetime: when he was a baby - and they attributed it to a fever. Sure, he has his 2 VP shunts in his brain and wears glasses due to the toxo scar on his right macula but he sees everything and "he will learn to read 'normally' and drive" - as they repeated over and over again to us in the NICU upon diagnosis of the infection. Zelda somehow got such a higher dose of the parasite - possibly due to her placement in my uterus.

Zelda was very quiet that morning, keeping to herself and a bit cranky. When I asked her if she was OK, she would say No. She felt warm. Her hands felt limp. She was pale with deep purple lips - all signs of a seizure approaching. It's as if now, as she grows older, she's able to know that something is not right. So, we gave her an extra dose of Keppra and she and I got into bed to take a nap while Creed watched cartoons.

Suddenly at 11am, I had dozed off and was awoken by a gurgle and wheezing sound. Next to me, Zelda was jerking her hands and had started seizing. I called (in this order): Evan, Jason (our EMS commander BFF), and 911. While I was making the calls, I ran to the fridge, took out her Diastat and gave her a suppository of medicine (sorry if that's TMI)...and it worked! She immediately calmed down.

It's often tough to find our little bungalow - as we live on a private alley so I sent my little boy - out in his underwear - to the front porch. Imagine Creed, jumping up and down in his Underoos, waving to the ambulance and oh, so proud of himself.

Off the the ER we went. Her vitals were good. No shunt malfunctions and no sign of pneumonia...we were discharged by 5pm...

Zelda tends to open her teeny little eyes when she wakes up from the seizure...


And she immediately gets busy...


Reading her Braille...


And then crashes again with Uncle Seth...

Christmas is coming...

...ack! The Holiday break started today - like marks on a prison wall, we count off the days of finding suitable fun for the twins' while we still try and get some work done. Really, it's great to have them home, they are adorable and fun but at age 5, it's still very: "Mom, what's this?" "Mom, look at that!"

So, Day 1:
- redecorating the tree (Creed, in his very French Montessori way, likes to do his travail - that is: his "work" removing the ornaments and replacing them EVERY DAY!
- cleaning up with Zelda as she experiences every box and bag of food in the house and the crumbs that accompany them.
- listening to Bebel Gilberto, the Biscuit Brothers Christmas, and the Rolling Stones Sticky Fingers - ad infinitum...
- perhaps a trip to Hancock Fabrics and Office Depot?!!
- Aunt Shakti visits tonight so Evan and I can sneak off to an attorney friend's office holiday cocktail party.

Yesterday was spent at various Pre-K and Ecole Christmas parties, so here are some photos to be shared:

The absolute best recent photo of la petite Z - taken in the garden at her Pre-K program. I love her Elvis sneer and by the way, she's holding an eggplant.

The hysterical mug-shot Christmas ornament, starring Zelda in a Yard Dog t-shirt:


Z in her classroom wearing her oh-so-80's inspired Holiday outfit...


At Ecole, with the friends singing "Vive le Vent" - that would be Jingle Bells..




I call this photo "Cheeks": Creed and Tito enjoying their French holiday potluck...