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...

Le Vendredi Noir, Santa and Olfactory tins...

Just a few things on my mind:

...so, in the past few years they have been referring to this day - the day after Thanksgiving as Black Friday. Wide Americans in their bad t-shirts camp out in line at the big box stores to storm "La Bastille" and pull everything off the shelves in the guise of buying at discount prices. Now, they're trying to combat this day with a special promotion tomorrow called "Small Business Saturday". What I think is unfair is that today, the unsightly, reckless, unsophisticated battle has claimed the glorious non-color of Black for their moniker and tomorrow we (our small, independently run businesses) are stuck with a generic, unoriginal name...I assume you know how I feel about this. AND, another thing - I had a call from a local TV station the other day to comment on this Saturday's "SBS"..."as a small business owner, will you promoting and participating in this wonderfully local event, by slashing your prices to bring customers into shop at your boutique?" Why? No. I work hard. Every small business owner that I know does, too. We are not about to compete with WalMart's $1.99 specials while we slave over our original products, our merchandising and our beautiful displays - never mind paying our loyal employees more than minimum wage. I hope that my customers will understand that I try to offer them the best product for their money and don't have the 1000% mark-up that would enable me to slash their retail price down to just a few more cents more than what I would be paying a child in a third world country for production. Sigh...

So, No. 2: Creed is so into Santa this year. We have been seeing him everywhere since before Halloween. So, I lied. I have told Creed that we were not able to speak of Santa, look for him and discuss him until after Thanksgiving as it is against the law. Yep, that's right - I am a dictator. However, today the moratorium has been lifted.

and No. 3: Zelda is a cool little girl. One of the many things I love about la petite Z is that we have so far successfully avoided the pink sparkly-dom of little girlhood. No "My little ponies", no t-shirts with princesses on them, no Barbies or any dolls for that matter. However, as she grows older, it gets increasingly more difficult to buy her gifts aside from books and music. I have turned to making them -gifts that is - and this year, I have a super idea for her Christmas gift and I beg the assistance of my dear readers. Here is the idea: each morning I drink my tea from Mariage Freres that comes in a wonderfully smooth and beautiful black tin, I save them or regift them but at this point I have at least fifteen or so, like this...



I want to capture smells, fill each tin with an object either possessing the smell or just the smell itself. On the bottom of the can, I'll label the smell in Braille. We can play the game with her (and Creed as well, for that matter) as she chooses a tin, she'll open it and I'll ask her to identify the smell. After she distinguishes the smell, we can read the word together labeled on the bottom of the can. Not only will she be sharpening her olfactory sense but she'll be practicing her Braille as well. So, I have coffee, leather, roses, glue, tea(!), but I need others...pray tell, dear readers...close your eyes, think of your favorite smells, how they be represented or stored in a can? Send me your ideas...Also, I need a name for this game. So, here goes and merci d'avance...

Overdrive...

...yesterday I was thinking about myself. Depressed, angry and cranky over my upcoming surgery. Tuesday: my bilateral mastectomy...losing my perfect Marie Antoinette "coupe de champagne" breasts. I am 52 and I have never had to wear a bra. When the other girls were sore and developing in middle school, I could run faster than anyone AND without pain. They have served me well. Made me money. Given breast milk to my twins for 13 months. I am angry.

Then, I got a phone call from Zelda's teacher. She had a fever of over 100 degrees. Everything drops. Zelda hasn't had a seizure in 8 months and she is now on 2 different meds that seem to be working. If she gets a fever, a seizure could appear at any moment. I run home, get a syringe of Children's tylenol, a syringe of Kepra, and her Diastat giant rectal injection in case she seizes.

Zelda's teacher, Mrs K, is an absolute wonder. She has already taken Z to the nurse and has her waiting there for me in case she starts to seize. They have no signed permission to give her anything to lower her temperature, so they wait for me. And when I arrive, there she is...my beautiful little girl: smiling and happy albeit a little warm. I give her the meds. She chats on the way to the car and we go home.

Seizure averted.

I am still having my breasts cut off on Tuesday. But my kids are IT. I will fight for them and advocate for their health as long as I am alive...my own shit...not so much...


Zelda, last weekend, at her first "girlfriends birthday party"...

Happy Halloweena...

...that's Zelda's choice for a costume. So, in a matter of a week: black tutu, skull tights, orangey shirt, black bow in her hair. The trick with Zelda is to not make her feel as if she's wearing a costume, i.e. something strange and uncomfortable. Well, it worked. Creed was a dinosaur but backed out on the make-up at the last minute. A good time was had by all - well, except maybe for me as I was sick as a dog in the aftermath of my fashion show.

Zelda AKA Halloweena in her favorite tunnel at Little Stacy Park...


Creed, a very tired Dinosaur...


Creed with his friend, Lucy, at the Halloween party in the park...

The Zelda Chronicles...

...as promised, here's the 5th year Zelda update. As relayed earlier, Creed is exploding on all fronts - and the same goes for his sister. Zelda attends one of the best public elementary schools in town every day from 7h45 - 2pm. Yes, we drop her off in her PPCD classroom (that's Public Preschool for Children with Disabilities) every morning at an extremely un-godly hour. She happily jaunts down the hall with her long white cane as the other kids stare, some dare to say 'hello', and as the parents jump out of her way while apologizing profusely. The beauty of the situation is - that in this overly white, upper middle class environment where all the mothers are perfectly dressed in their exercise attire each morning and the dads wear rumpled khaki suits, Zelda knows no visual stereotypes. Diversity, (or lack of) at this point, may only be absorbed through what she hears. So, I guess her mom and dad need to stop being so judgemental and critical!

Anyway, her PPCD class is one of inclusion and it blends with the Pre-K class each day, therefore preparing her for the foray into public kindergarten next year. Andrea, her TVI, works with her on Braille, reading and writing, three times a week. Lonnie, her O & M, works with her to navigate the halls, the playground and general cane usage two times a week. She sees Miss B once a week with a group for Speech and then once a week privately and her language is improving by leaps and bounds. At 2pm everyday, she rides the bus to join Creed and her longtime friends at Ecole, where she continues to be immersed in French and hangs out in the garden for extended day play.

AND, the biggest milestone is now Zelda is peeing in the potty. Wow, wow, wow! We were trying to remain calm and less impatient but with the help of the PPCD team and her beloved teachers at Ecole, she now is potty trained. Except for the poop factor - that deserves a whole other entry. And, I need to write a book. Yes folks, information on how to potty train a blind, stubborn little girl - not much about it anywhere and believe me, I have searched!

Hmmm...let's see, other big news: Zelda will now play by herself and with others in a bouncy house - you know, those giant inflatable things kids have at their parties. Up until last week, she always whined and often screamed for Evan to go in with her but at a recent Ecole potluck, she climbed in herself, jumped, fell and giggled with the other kids. Whew!

She likes to do laundry and put things in the dishwasher...she is even starting to get dressed on her own which is more than I can say for her twin brother.

And, when asked what she wants to be for Halloween, she declared, "Halloweena!" We're working on that one and hoping that it's her first outward display of her imagination.

She sings and continues to identify music and for her 5th birthday at PPCD (where they request no sweets or food, but an activity), Zelda chose the Rolling Stones and had a dance party to 2 of their songs from "Exile on Main Street".

This week, we attended the walk from the Texas State Capitol to City Hall for National White Cane Day...she was by far the tiniest ( and cutest) kid there! GO ZELDA! And I must admit, it really is hard to remember these kids as babies - they are growing, learning and exploring by leaps and bounds. It just gets better every day...

Creed style...update on the boy...

The twins have turned 5, so it's time to update on their lives, their developmental milestones and of course: their style! Credence Paul is a party boy. He is adorable, sneaky, kind and smarter then we think. I say that because something very interesting happened last month. Friends were in town to visit: my old pal, Seth and his partner, Christopher. We had a wonderfully enlightened time. It just so happened to be at the end of the twins' 3 week vacation between Ecole summer camp and the start of the new school year. In other words: school was out and they were nuts. Creed was taking every opportunity to push all buttons, boundaries and manipulate everyone and everything in his path. So, one afternoon, while Evan, Seth and I went to visit my mom in the hospital - as she had recently broken her hip - Christopher and a friend of his stayed home with the kids. Now, Christopher is very, very wise, observant and has dealt with lots of kids so we were eager to hear what had happened while we were gone as the dynamics with our two kiddos are usually out of the ordinary.
I won't go into great detail but a power struggle ensued between C & C and Creed learned a good lesson as did we. When describing the events, Christopher started with: "First of all, Creed is extremely smart. Really, really smart." That stopped us in our tracks for several reasons. We have dealt with many doctors, educators, and therapists during the short 5 years of their lives and the message has generally been repeatedly: Zelda is so very smart and Creed is so cute and friendly. Wow, what had we been doing? We had let this sink in and begin to cloud our expectations and general view of our childrens' characters. Sure, we knew that both assessments were true - but to have already pigeon-holed them at age 5 in our own minds? It started me looking at Creed in a whole different light. But wait - it's not that I didn't think that Creed was smart, it's just that I had always heard that Zelda was the smart twin. Ackkk!!! I was horrified, embarrassed and felt like someone had just opened a door to my view of my own son. Thank you Christopher!
Anyway, Creed is in his 3rd year at Ecole. The twins' missed the cut-off for Kindergarten as their birthday was the 15th. He is the oldest in the class and it's great to look back on how far he has come. He understands everything in French and at times, even responds in his 2nd language. He loves to help the younger kids. He is still generally sweet and kind, despite turning into a rock-'em, sock-'em kind of boy. He runs, crashes and explodes into everything in his path. His imagination is exploding as well: "Mom, I am going to marry Millie. We need to go to Home Depot and buy paint and wood to build our house in Mexico. Dad, can I borrow some tools?" Or the other night, "Mom, I am so tired...but I still want to go to the Continental Club to hear music."
Creed wants to continue with ice skating lessons and expresses interest in taking ballet. It will be interesting to see how he'll handle contact sports as he becomes more aware of  the shunts in his brain. We have started talking about them and he is aware of the tubes in his head. He is able to talk about his vision and will tell us about his good eye(left) and his bad one (right). He's been potty-trained for 2 years now, pees standing up and never has accidents at night. He prefers to be naked when at home but still likes us to pick out his clothes for school. With that said, it's fun to pull out all of the vintage kids' clothes we have collected over the years - stuff we have been stockpiling - and then put them in when they arrive at the appropriate age.

Creed is getting tall and slim - like his dad. And he looks great in a pair of vintage jeans.

...and Now!

J'ai 5 ans..2 parties down...1 to go!

Z's favorite gift - a jewelry box of buttons and bracelets from Aunt Kia.

Presenting the amazing ToxoTwins...year 5!!

I do this every year...I relive their birth and the beginning of our lives together. My pregnancy was not fun but I ate like a demon, swam everyday and stayed chained to the daybed. Evan didn't want anything to go wrong. Despite various terrifying bouts with cramping and bleeding at weeks 6, 12, 14 and then at 26w5days, the babies were growing, kicking and playing games in my belly. I knew that Baby was a feisty girl and that Baby B, was a sleepy boy. (Not much has changed!)

On September 14th, we had a lovely rendez-vous with Katherine, a wonderful woman, who we signed up to be our post-partum doula. Friends with twins said she was the best and we should sign her on for the overnight shift. So, with a due date of December 17th and Dr Polon's thoughts that I would only make it to 34 weeks, we decided that she would come on in November when the babies would come out early. She would work 5 nights a week - on from 10:30pm - 8am, so we, the over 45 parents, could get some sleep!:)

I swam that afternoon at the lovely pool at the Austin Motel near our little house. At about 6pm that evening, I started bleeding - just a bit, with some slight cramping. My whole pregnancy had had scares like this, so I calmly called the amazing Dr Clive Polon. He responded in his wonderfully lilting South African accent, "Don't worry, sweetie. Keep careful watch and call me if it gets worse." So, I tucked myself into bed, the bleeding slowed down, but the cramping continued. Being a rather slim woman and carrying a bellyful of twins, I had almost constant menstrual cramping throughout the entire pregnancy up until this point. But I was worried and couldn't sleep. I made Evan stay up almost all night with me - quizzing him aloud from that month's Texas Monthly issue on Texas History. We sang, we talked, we called Dr Polon several times.

The next morning, Dr P said to come to his office right away. He took a look (I'll spare you the details) and said, "Sweetie, the babies are fine but something's not right. You're having contractions." My cramps were actually contractions! What did I know, having never been pregnant before!? I was admitted to Saint David's, hooked up to 3 heart monitors, one for each baby and one for me. They gave me a shot of magnesium sulfate to slow down the contractions - assuming they would abate and that I would be able to go home after a day or two - as well as a shot of steroids to assure that the babies' lungs could handle breathing on their own "just in case" they had to come out early. That was at 10am...Evan starting making the calls...Dr Polon checked in .... the nurses were on surveillance...the cramping worsened....at 4pm, the nurse came in and saw me, "I know that look," she said, "You're in labor." She then proceeded to stick her fist into my uterus and I screamed in pain. "What the fuck are you doing?"

Dr Polon came in at 6:30 pm. He calmly told Evan to go home and get everything we needed - a camera, my bed pillow, whatever else, make the calls...the babies were to be taken out. I cried, "They're too small and not ready." I was a mess. He said that they were fine, but they wanted/needed to come out before something started to get worse. They weren't sure what it was...

My sister Shakti, my sister and brother-in-law: Claudia & Lee, friends Laura, Kat & Don, Victor & Laura: our Katrina refugees from New Orleans - they were all there...the C-section room was freezing. The wonderfully amazing epidural raced through my body and they strapped my arms down in crucifixion mode as my body started shaking uncontrollably. The sheet was put up across my chest and Evan stood holding my hand. I talked of Texas History with the anesthesiologist - he said that was a first during any of the deliveries he'd assisted. Dr Polon stood on my left and out came Baby B, my little boy who quickly became Baby A in the delivery order. Then came my sweet little girl, Baby A became Baby B: born second at 10:32pm. I cried to Evan, "Where are they? What do they look like?" He replied, "Long, grey squirrels."

There were 14 people in the delivery room, besides the delivery team, etc., there was an neonatologist for each baby, their assistants and then some...a real party! I remember Dr Polon holding up Zelda before they whisked her away - she lifted her tiny, skinny grey arm and her eyes were open. They had no names yet...

Zelda at 1 month old

Creed at 2 months old

Happy Birthday to my dear Toxotwins!!!

The letter A...

...is one dot. A Braille cell is made up of 6 dots - 2 vertical columns with 3 in each column. The letter "A" is dot number one, the upper left corner position. Zelda is learning the Braille alphabet. She is grasping the concept of reading - left to right, starting in the upper left hand corner. Just like Creed is learning the concept of reading by holding a book upright as opposed to upside down, moving his eyes from left to right, following the letters, words and sentences. I am very specific with her teachers when we get together to set her IEP (Individual Educational Plan) for the school year. Her goals must be the same as a sighted child at her age. In this case (among so many others!), it's great to have twins; not to compare them, but to track and be aware of age appropriate goals. So, Zelda is learning her ABC's and every time she feels one dot, one button or even a small knob, she will proudly announce "A"!

Another thing Zelda likes to do is snuggle, kiss, and pat my body. She'll gently pat a part of my arm and ask "Mommy, what's this?" And I'll respond, "That's my wrist, Zelda" - constantly trying to add to her specific vocabulary.
"Mom, what's this?" "That's my back, Zelda."
"Mom, what's this?" - as she pats my chest. "That's my chest and those are my breasts."
And then... she feels my nipple and proudly says: "Mommy, "A"!!!"

Merci, Madame Darla...

A brief interlude, a photo shoot and a connection to my Blackmail Design Blog... go there to see more photos and read about that morning...

Zelda

by Darla Teagarden

Etape 3...New Hampshire & beyond.

So, we left New York and headed north to New Hampshire - the little town of Henniker, to be exact. We arrived in the midst of yet another Memorial day parade but I'll spare you any more flag photos. Our old friends from Austin, Adam & Mary Catherine left Manhattan a few years back with their kids, Quintana and Levi and built a lovely house on the side of a mountain. It's all pretty idyllic - they can both travel for work when they need to, yet live in a small, New England town with other like-minded people and their kids can go to a cool school not in the big city.

Needless to say, Levi and Creed hit it off swimmingly - literally and figuratively. Toy cars and light sabers were exchanged. Quintana willed Zelda a beautiful pink dress. Neighbors dropped by for Evan's famous caipirinhias and in the evening, after Adam left to fly off to Florida for a directing job, the adults sat out on the porch, listened to the sounds of the night, shared stories and drank wine.

...and holiday: Memorial Day

...a little parade in Armonk, New York...lots of old veterans made me think of my Dad and the kids talked about PopPop. Spent most of the day running on the big green lawn - soooo, very jealous of soft grass as Texas is brown, short and spikey. Ugh.
Stay tuned for Etape 3: Henniker, New Hampshire...

L'Etape 2: Yale, a birthday and a holiday...

Evan's birthday just happened to be the Saturday of his 30th Yale reunion. Such a party with more than a hundred people under a tent. And as a group - that is, Evan's friends - we all decided we looked younger than anyone else. Having the twins with us definitely helped.
Many thanks to Jerry and Mary for their hospitality in Beford, Ann for the cake and babysitting in Woodbridge, and the Peabody Museum and the dinosaurs for not kicking us out when Zelda opened the fire door and set off the alarm in the entire building. "Mom, what's that sound?"...

Etape 1...on our "Tour d'East Coast"

So day 1, our little peloton loaded up the car with clothing, supplies, and enough Pirate Booty and Cheerios to last for 2 weeks on the road. Leaving at 8pm, we headed north towards Dallas and didn't even make it out of Texas that first evening - Texadelphia? Texarkana? But by the time the next day rolled around, we had passed through Memphis.

Dinner was in Nashville with friends, but not until we had been stopped for speeding in Arkansas. The cop looked at Evan's license and his 'foreign' last name and asked him "You're not from here, are you?" "What kind of name is that?" I personally think that he thought he was working in Arizona and had gotten his 'A' states confused...

We had barbeque with Steve - Evan's old friend from Yale - and his son, Taylor...more driving into the night. It was already Thursday and had to be in Bedford, NY by Friday evening...

Oh, and speeding ticket No. 2 was procured in Virginia the next day...but we did make it to our destination right on time.

The long and winding road...

...of over 5000+ miles. When Evan first suggested that we drive east to our college reunions at the end of May, I wanted to kill him. We'd done that trip so many times before and the last time - in 2001 - was miserable. I never wanted to see the highwways of Arkansas again. But as we mulled it over and over, the 4 plane tickets, the 2 week car rental and all of the freedom we would have on the road, our decision was made.

We set off before the end of Ecole and right before Evan's birthday, destination: Yale in New Haven for his 30th college reunion. My 30th reunion at Gettysburg in Pennsylvania conveniently happened to be the following weekend so we tacked days on for travel before, a week sandwiched in the middle and the time to get home and there it was: a 2 week road trip through 13 states and thousands of miles with 4 1/2 year old twins...here we go!!

Don't forget to say...congratulations

I go back to St. David's a lot. It's the hospital where the twins were born, the place where I have had all of my cancer surgeries and the home of the Breast Cancer Resource Center. I am running there at least once a week while we plan Graphic 4: the Art Bra Fashion Show to benefit the BCRC. But that's not what this post is about.

Each time I swing around the drive to pull into the parking garage, I pass the main entrance to the hospital. And each time, almost any hour of the day, there is inevitably a new mom waiting to leave the place with a newborn infant in tow - eager to position that stupid, ungainly baby carrier in the back seat so she can sit next to it and ooh and ahh while some husband, partner or chauffeur drives them home. There are balloons, there are smiles. And each time I see this, I still cringe. It's been almost 5 years, my twins are healthy and thriving and it seems like eons ago that they were born 3 months early and so very, very ill. Evan called them little grey squirrels at just 2 lbs each. And the hardest day of my life up until now - even harder than cancer, even harder than finding out that Zelda was born blind, and perhaps rivaling the pain I felt when my Dad died - was the day I left that hospital without my newborn twins. I was so pissed off that day. I was so angry at those other happy moms.

My friends and family were wonderful. They brought food, they brought flowers but they were afraid. We were afraid. They tiptoed around the questions about the "non-perfect" children, they mourned our "loss" of an idyllic birth experience...And it was hard. It did suck. Our friends were reverent and concerned and worried about us and the babies. I loved and appreciated all of them for it despite my feelings of guilt about going into premature labor and overwhelming post-partum depression.

But the other day, I ran into a friend. He and his wife just had a baby born with Down's Syndrome. I looked at him and smiled knowingly. I asked him how she was doing, empathized over the lengthy NICU stay but most of all I said "Congratulations! I am so happy for you and your wife and your new daughter."

We are so lucky. I am so lucky to be a mom. Whatever the experience, whatever the birth, please don't ever forget to say those words...they mean more to the parents than you'll ever know...tell them "Congratulations"...

franglais...

So, as most of you know, the twins attend a French Immersion Montessori Preschool that we lovingly refer to as Ecole. This is year #2 and they'll be there for one more year before kindergarten. There are 3 teachers and less then 20 kids - it's a great, loving and nurturing environment. It's also funny when I tell people that's where they go to school, because then they expect Creed and Zelda to just start spitting out French. One has to remember that although the teachers only speak to the kids in French, the students are American (or at least half) and communicate effortlessly in English.

Creed and Zelda understand pretty much everything that I or their beloved teachers say to them. They answer questions and easily follow directions. They automatically respond with "Merci" and greet with "Bonjour". If I say, "Fais voir ton visage" to Zelda, she lifts her head and smiles. If I ask, "Ou sont vos chaussures?", they'll scurry to put on their shoes.

But the aspect that I am loving the most are Creed's questions, requests and interpretations. His half French/half English. His reference to particular objects only with the French word. His Franglais...

The other day, upon spilling some popcorn in the kitchen, he ran up to me and asked: "Mommy, may I have the balai?" That would be the broom. And then "How about the pelle?" Dustpan. He shook Evan awake the other day, "Daddy, I want to see your travail!" Show me your work!
And finally this morning while gathering his supplies for Ecole, "Hey, where's a grand bag?" As opposed to a petit...

Et alors, ca marche, cette histoire....It's fun to watch the way their little brains process and interpret language. It's interesting to think that they're not translating as one does when learning a language when later in school. Hopefully we'll keep doing this with them...at least until they start to complain - in French, of course.

See with your eyes, not with your hands...

WRONG! But how many times have you heard a parent say this to a child while shopping or at someone's house or in a museum, etc...

We love to go the City Wide Garage Sale every month. All of our favorite antique and junk vendors and friends come in from everywhere to peddle their wares in a big auditorium. Evan and I have been going for years so it's only natural that we continue with this Saturday morning tradition of paying a bit extra to get in beforehand for "Early Shoppers" time. We've been taking the twins since they were in their Baby Bjorns. All of the vendors know them and love to catch up on their news.

Usually we divide and conquer - Evan will take one and I'll take the other. Creed is a rascal and usually gets out of there with a bunch of free vintage cars or balls of string or even a plastic little horse or something. Yesterday was no different, yet as he scampered around and was feeling like he owned the place, I found the dreaded words leaving my mouth. "Credence, we see with our eyes, not with our hands!" Ouch. Wrong. So, I stopped and explained about other's possessions, that we were shopping and that we had to ask before touching. How can I condemn one child's curiosity when his sister uses her hands to see?

When Zelda and I hit the aisles, it's a bit different. First, we'll go and see Deborah and Harrell, they're have vintage guitars and cowboy boots, and racks of rayon slips and old crinolines. Zelda will bury her body in them and walk away with a hanger (one of her favorite items to play with). We'll stop by and see the piles of ropas usadas from Ahab Bowen. With each different table of old linens, scarves, t-shirts, even old furs, Zelda will touch each piece and hold it to her cheek, asking, "Mom, what's this?" Our lesson in textiles will unfold. We'll see Miss Linda Parker, whose booth is artfully arranged with shabby hues of off-white linens, lace, books and curiosities. She loves Zelda's hugs and tries to always find old Braille books for her. Miss Linda introduces her to friends and Zelda hugs each of them. Sandy Schor sells tables of collectible jewelry, strings of beads and chain and underneath the tables - heaven! Zelda sorts through plastic containers of buttons; all the time seeing with her hands.

We stop at one table and a there sits a school autograph book from the late 1880's. Zelda: "I want to touch it." "Mommy, I want to read it." I carefully explain how fragile it was and we turn the pages together, with each page, her tiny fingers search for Braille.

Our final stop is Sarah Lawson, her trays of beads and jewelry findings are the perfect height for la petite Z to rearrange round glass orbs and small metal clasps. Sarah doesn't seem to mind that Zelda has confused her system and says that it will give her something to do for the rest of the afternoon. When I tell Zelda that it's time to go, she tells me that she's staying with Sarah.

The City Wide Garage Sale, like so many places in Austin, is another aspect of our playground. And with each different place or outing, a discussion ensues...we can see with our hands, all of us can...

Real Housewives of Austin, TX...

...so, everyone is gaga about Reality TV and I don't even watch it - mainly because I don't have cable, thank goodness. As I drove the kids to Ecole this morning...I pitched this series in my mind:
Evan, self-employed artist/signmaker husband, is off on a week long trip to Florida to deliver 3 big ole' vintage signs to a rich client in Boca. I sleep through the alarm and wake up with the sleepy twins in bed with me and 15 minutes to make their lunches, feed them, get them dressed and out the door. Meanwhile, Zelda, with her particular potty training, insists that she spends at least 10 minutes sitting on the potty listening to glam rock, Triple Cobra. Creed, on the other hand is preparing a HUGE bag of various cars, dump trucks and jeeps to haul to Ecole for extended day play.
Loading the car - me, still in my PJ's and my post chemo, platinum blond hair resembling Phylis Diller - I have our builder, Tattoo John, watch the kids as I run in and out to get Zelda extra shoes and leggings in case she pees on them...

Up Mopac, I am writing this scenario in my head. Deliver kids, first Zelda to Gullet, then Creed to Ecole. My sleeping pill still hasn't worn off from the night before. Home to find out we have no electricity on our house renovation job sight, Tattoo John is dealing with inspectors (we haven't passed - yet) and Carlo, our steel guy has just arrived to install 3 flights of our staircase and needs 220 power to run his welder. What to do? Tap into the neighbors fuse box. Woohoo!

I guess I am missing the drama of: lady friends in tight spandex dresses, pedicures, cocktails, plastic surgery, cat fights & such to make this a viable Reality TV show...but this is it...for now...
Tune in for more.
Oh, and by the way, now I am at work, running my own shop and trying to finish a bunch of sewing...

while Daddy's away...

Ce n'est pas normal...

I've had this friend for a very long time in France - going on 30 years now. She's a bit difficult, very Parisian, very particular and quite bitchy. But we've been through a lot together. I remember when I first moved there years ago, I stayed with her while I looked for an apartment. We would fold the linens in the morning, she at one end and me, holding the opposite corners of the sheets. If you've ever tried to fold sheets with someone, it's inevitable that one person will fold in the opposite direction. When this would occur, Marianne would stop and say, "Gail, ce n'est pas normal." - It's not normal to do it that way...When cooking, she would ask me to prepare the salade. As I broke the lettuce and prepared to wash it, again she would say, "Ce n'est pas normal." Any time I would do something that wasn't in tune with the way she was taught or accustomed to living: to her, it wasn't normal. We had explosive discussions about this. And to this day, the semantics have never been resolved.

So, the other day, I had my first appointment with a plastic surgeon. I must interject that throughout these past several years of fertility treatments, premature births, retinal and neurosurgeries and cancer, I/we - the family have had the most wonderful health care professionals. From the ER doctors down to the nurses and PCA's. So, whenever I go to see a new doctor, I come well equipped with my questions and also an attitude of "this ain't my first rodeo". But as I entered this surgeon's office, I felt vulnerable about my discussion of breast reconstruction as an option after my upcoming bilateral mastectomy.

First of all, I have had 4 surgeries in the past 14 months, plus dose dense chemo and weeks of radiation. Now, with this positive BART result to my genetic testing, I am due to have my breasts cut off. Thus reigns the question: to reconstruct or not to reconstruct? I am a AA at best. Perfectly small, Marie Antoinette, non-sagging breasts for which I have never had to invest in any sort of brassiere. I don't want anything bigger and I quite like myself the way I am. That, obviously is not an option. I have grappled with this decision for a while now - do I need breasts? I haven't really had them my entire life and these little ones that I've had have served me well. They nourished my preemies for the first 13 months of life and now, they're done. So, why not just have them taken off and not replaced?

Well, I had hoped to have had an open, frank discussion about this dilemma but unfortunately I have learned that women walk into a plastic surgeons office and are confronted with one thing: the options for the type of reconstruction, NOT whether or not to have it done at all. When I tried to approach the subject, I heard the dreaded words "Women do it to feel normal, to look normal again". Marianne's voice was ringing in my ears. "Ce n'est pas normal."

What the f**k is normal? But moreover, why would anyone want to be...? I will choose abnormal anyday. We will fly the abnormal flag: my daughter who can't see, my twins' who live with tubes in their brains, my husband who went to an Ivy League school and became a cowboy boot collector and artist instead of an attorney, and me...without breasts.

Sigh...I STILL don't know what I am going to do but I do know one thing: I won't be going back to that plastic surgeon.

Missing you...

It would have been my Dad's 90th birthday this week. This photo was taken in 1944. I am missing him so very much...

2010 workin' on a dream...

Trying to break into the New Year while still reflecting on the Old. It's hard to sum up 2009 with good memories so I've decided to do a + and - look back...

Although I was diagnosed with breast cancer in 2008 and had my first surgery before Christmas, 2009 still feels like the year of Cancer, so here we go:

- Had my port-a-cath put in by Dr Ames Smith, BUT +, it was a flawless surgery and easy to recover from.

- Creed hit his chin at Ecole and had his first experience with stitches, BUT +, he was a happy, cheerful, trooper.

- started my first chemo on January 20th, BUT +, Obama was inagurated.

- Had all of my hair cut off and my head shaved, BUT +, shared it with beautiful friends and have amazing photos, thanks to Todd.

- Mom was diagnosed with Stage 2 breast cancer, BUT +, she didn't have to suffer through chemo...

- Lori was diagnosed with Stage 2 breast cancer, BUT +, they were able to shrink the tumor before her surgery.

- 2 months of chemo was hideous, BUT, +, we took the twins to a wonderful outdoor Alejandro Escovedo concert during SXSW.

- Month 3 of chemo was awful, BUT, +, Jerry and Mary visited from NY and we went to see Bruce in concert. Also, modeled in Graphic - the BCRC Art Bra fashion show.

- Final month of chemo was debilitating, BUT +, Manu came from Paris for 3 weeks and I auditioned for a Nike commercial. Also, was contacted by People magazine to do an article about our family's fight with cancer.

- Started Radiation in June, BUT +, got the role in "Driven" - the Nike commercial! Also, took a family trip to the beach and Zelda & Creed LOVED it!! And the People magazine photographer came to shoot us on Father's Day weekend.

- finished 7 weeks of radiation in July, BUT +, headed to Sturgeon Bay, WI to stay with Bill & Kathryn, and then into Chicago to see Margo & Luke and their girls and Gemma, Rowley and Fin and of course, Dr McLeod and the toxoplasmosis research group.

- I was still bald and exhausted, BUT +, Craig and Seth came down to help me take the twins back to the beach.

- Was asked to participate in a Myriad study for genetic predisposition to breast cancer, BUT +, the twins went back to Ecole and and Zelda started her PPCD program.

- Hair was still only under 2 inches long and hated it, BUT +, Zelda and I flew to Pasadena, CA to see Dr Tawansy. Her retinas have remained attached! Creed and Evan took a road trip to El Paso.

- Dad was sick and in and out of the hospital, BUT +, he made it to the twins' 4th birthday party and I was named Honorary Chair of the Breast Cancer Resource Center's Annual Luncheon. I gave the keynote speech.

- Dad was still sick, BUT +, I flew to New Jersey to attend the Camp Beisler reunion and had a wonderful time reconnecting with old friends.

- Lori and tested positive for the BRAT genetic coding and now we have new things to consider in our treatment - which we thought was over, BUT +, I am flown to Beaumount, TX with my friend Deborah to give my speech "Cancer tries on my shoes.." before 1500 people.

- New options for treatment are not good news, BUT +, I am asked to present at Pecha Kucha night with 9 other Austin creatives.

- Dad died...

- Zelda had her 3rd seizure of the year...

- I had my ovaries removed to cut the risk of developing ovarian cancer from 45% down to 4%...there were no cancerous cells in my ovaries.

- Alton visited and Seth and Craig came back for Christmas and New Year's. The kids had a blast. They are happy. healthy and cheerful. We have 3 floors on our house that is under construction. Evan is busy, busy, busy and this year....I will have my breasts cut off.

Happy New Year...