Monday, December 22, 2008

HO, HO, HOpe...

It's beginning to look a lot like Christmas...so, our week goes something like this.

Sunday: Errands, waffle party, work

Monday: "Uncle" Seth arrives from Telluride and "Uncle" Craig arrives from New Haven. Evan has nicknamed them the Swedish bachelors; they come every Christmas and we eat, make movies and catch up on the news of the year.

Tuesday: 7am - Zelda goes in for an MRI on her brain and her orbits...looking to see that her eyes and sockets are growing accordingly.

Wednesday: 8am - my first visit to the oncologist to discuss a treatment plan. Things are going as well as they possibly could. The final pathology results showed the margins removed along with the tumor are clear. The 3 (count 'em 3!) sentinel nodes are clear. They say the cancer is stage 1 and it's good that I caught it early. Oh, and the HER2 came back negative - not sure exactly what that means but I do know that you don't want it to be positive. So, on Wednesday we'll get a plan of attack be it chemo or radiation or both...and then possibly a second and third opinion. I am feeling well...just still tired and sore after the last weeks surgery.

I guess the best part of Christmas Eve will be our Reveillon meal...Seth will cook up our annual feast for dinner. I'm thinking foie gras...

Thursday: Merry Christmas! Off to the 'burbs to be with the entire family and guests.

AND, un grand merci to all for the good wishes, prayers, karma, Native Amercain spirit bags, natureopathic remedies, childcare, handholding, and flowers ... oh, the flowers!

Zelda and I are still debating about our trip to Paris for the 200eme anniversaire de Louis Braille on January 4th. We would have to leave on New Year's Eve but it looks as though traveling with a toodler while recovering from surgery may not be the best choice, but I AM feeling brave...on verra...

Wednesday, December 17, 2008

Out damn spot...

So, yesterday Dr Smith went in and took out the tumor. He performed the sentinel node biopsy and removed 3 'gatekeeper' nodes as well as a 4th suspiciously palpable one. He then performed the lumpectomy removing the tumor and a good margin of surrounding tissue. Early pathology reports showed the nodes to be clear. But now there is 48 wait for the final pathology reports and the staging. I'll spare you the details of the burning radioactive isotope injections and just say that the surgery went well and I woke up smoothly.

Today was spent in bed with pain meds and an ice pack. Creed saw my scars and bruising and said "Mom has 2 owies!" I'll say...

Fingers and toes remain crossed for clear pathology reports for tomorrow.

Monday, December 15, 2008

I came home to cancer...

(sung to the tune of "I'll be home for Christmas")
We arrived home a week ago from a lovely time in Jamaica. It now seems so very far away...relaxation, I read 3 books, swam, ate & drank. I had a massage, kayaked in the ocean and at night we would play charades and other silly games. Lots of good company and peacefulness made even better knowing that the twins were in good hands and enjoying themselves.

And now I have cancer. Weeks ago I detected a small lump in my left breast. The mammogram said all was normal but my erudite OB/GYN said he always sends a patient with a 'lump' off to see a surgeon. An ultrasound and a biopsy gave me the results on Friday. It's cancer. An MRI today told me that it's the only tumor in my breasts but it's aggressive and just itching to get out. Tomorrow I go in for surgery, he'll do a lumpectomy and check the sentinel lymph node. I am scared, pissed off and exhausted. All of this information has been gathered in just 6 short days. Today we talked to the radiation oncologist. As I lay on the table during my biopsy last week, squeezing the hand of the volunteer, I thought of all that my children have been through. They have had needles stuck in their brains while they were awake not to mention assorted holes drilled during various brain surgeries. They have had their eyes rolled around in their tiny little sockets and at one point point I recall at least 10 attempts by various nurses to start an IV line in poor little Zelda's fragile veins. She finally ended up with an IV line in her head. My situation is nothing compared to what they have been through.

I can get through this, I know I can. But it fucking sucks. I won't mince words. I am ready to stop crying, ready to stop feeling like a victim and start being a survivor...tomorrow perhaps?

Tuesday, December 2, 2008

Leaving town...

Just a quick check-in to say that Mom & Dad are leaving town...yes, Evan & I are taking 5 days of much needed R & R at a private villa in Jamaica with college friends from Yale. We are sooooo looking forward to this. The twins will be spending time with their wonderful Auntie S who will stay at the house. Auntie C will serve as chauffeur back & forth to Ecole. And Creed & Zelda will also have a night away at the Tunnel Trail Sleep Away Camp courtesy of our friends, Kat & Don. They'll be so busy that they won't even know we're gone. We'll be staying here...our own cook, rum drinks, a private beach and uninterrupted sleep.



Whoopee, I'll check in when we get back...

Wednesday, November 19, 2008

Ok, here it comes...

I am a member of a list serve for Parents of Blind Kids, the other day a mother posted this concern:

"My 6 year old daughter has recently started talking a lot about being
blind and about her "acrylic" eyes, as she refers to her prosthetics.
The other night, she said to me "Mommy, can you get me something so I can see with my eyes instead of with my hands?""

I know that it's a bit early for Zelda to ask a question like this but it's definately something to start thinking about...that's it for today.

Friday, November 14, 2008

Halloween bis...as requested

Little drummer Bat


"Look Mom, I got it!"


Vampire Family


"I came looking for Johnny Depp - err, I mean Sweeney Todd and all I got was a dead Mariachi!"

Thursday, November 13, 2008

Blind as a Bat AKA Halloween '08


Forgive my late blogging of the event of the season...Halloween, that is. So much has happened, not the least of which is Zelda learning to use her long white cane! Halloween was an action-packed, fun-filled week starting with the annual practice Trick or Treating at the Clarksville home of our friend, Margaret. The twins enjoy it more and more each year - apple bobbing, musical instruments, an A capella group, lots of kids and of course the T-or-T activity. We were the Rock n' Roll Vampire Family with Creed & Zelda as our little bats. Another evening took us out to Kat & Don's for bales of hay, tractor riding and pumpkin carving and then off to a Biscuit Brothers concert at Central Market. The following night was Halloween and the twins went out to the 'burbs for the T-or-T marathon evening with the cousins while Mom & Dad had an evening at the Black Ball. 18 houses later...Creed & Zelda had a sound sleep and we picked them up the next day.

So, at the end of October, Zelda received her very first long white cane courtesy of the NFB and is adapting quite nicely. There is a bit of controversy over the age of when a young child should begin to use a cane. The NFB basically promotes the sooner the better and I am in their camp. It promotes independence and confidence from an early age. She is so very petite and of course, elicits a lot of stares, comments and questions as she walks down the street, through the grocery store, or on the playground of Ecole. I like to tell her to "Tap gently" as she maneuvers her cane along the sidewalk. She was already a fearless and expert traveler and her instant attraction to her cane has only added to her desire to be on the go! People, as always, are crazy and inquisitive, but also quite ignorant: "Is that her Halloween costume?" "Is she practicing to be blind?" "Hey, watch out for the little girl with the stick!" Some just stare with the looks of sympathy and then hug their own children as if to protect them from a contagious illness. Others go out of their way to avoid getting in her way. Each day, I try to take the time to explain these questions and comments to her. Creed is also getting pretty good at fielding the comments, he responds "That's Zelda's cane!" He seems proud of her and he wants one, too.

Anyway, it was actually a coincidence that I chose bat costumes for the twins for Halloween. It got me thinking about comments, songs and such...the expression "Blind as a bat" is actually quite fitting because Z really does seem to exude an innate sense of radar or echolocation. But how will Zelda feel about the song "Three blind mice"? And then there was a joke about a blind race car driver a few weeks ago on Saturday Night Live. Evan & I looked at each other and asked, "Should we be offended?" ...Will Zelda develop a keen sense of humour and accept these aspects of our society with courage and grace? We can only hope ...stay tuned.

Wednesday, November 5, 2008

Yes, we did!!!

We celebrated an amazingly historic event last night. We celebrated the overwhelming election of Obama as the next President of our country and we did it at the former home of Barbara Jordan - the first black woman to ever be elected to the US House of Representatives. The twins fell asleep, but they were there and we'll tell them about it when they're old enough to understand. We drank champagne and watched as people around the world danced in the streets.

It's a future filled with hope for our country, filled with opportunities for our children, filled with the re-branding of America...

Friday, October 24, 2008

Go vote...

don't spend your time pulling up my "Yes, to Prop 2" yard sign or mangling my "Obama/Biden" sign. Use you time constructively and go vote for the candidate of your choice...I did.

That's it for today.

Friday, October 17, 2008

Now, about Creed...

I need to talk about my son, Creed. He is an absolutely delightful human being. He has dimples, he is ticklish, and he loves to run - everywhere. He is easily distracted but when he is focused, he stays with it. He is a drummer. He carefully selects his sticks and drums on a variety of objects. He also seems to be enthralled by any backstage activity at a show. He is slowly learning French, automatically responding with "Merci" and asking with "Si pay..." - his version of "s'il te plait". Creed loves his dad and his twin sister and hopefully his momma.

Creed is constantly surprising us with his memory, his agility and his enthusiasm. His latest trick is to tell me when he is about to leave the room: "Mom, I'll be back, okay? Okay mom? Okay? I'll be right back." Then 2 seconds later, he'll stick his little head around the corner and say, "I'm coming back!"

At our parent-teacher conference at Ecole, he was described as 'social' but he doesn't quite know what to do with it yet! "He seeks the companionship of other kids, especially boys." Although all the girls seem to love him because he's so cute. Lots of people think he's a girl because of his long hair - but I see him as all boy...yet he does have a wonderfully compassionate side to him...he's independent but fiercely protective of Zelda. "Is she okay? Is she happy? Did she poop?"

I have been having a rough few days for a number of reasons, Evan is away working in West Texas & 'Caleefornah', the weather is gray, I haven't been sleeping, the economy is cutting my business down to almost nothing...but at 7am when I go to get Creed out of his bed and see his sleepy little smile, it makes everything all better.

Early 2006, after months in the hospital (Z on the left, C on the right):


Creed now - on his 3rd birthday:

Wednesday, October 15, 2008

National White Cane Day...

So every year on October 15th, thousands of blind people across the country celebrate National White Cane Day. Here in Austin, there is a march from the lawn of the State Capitol down to the steps of City Hall. Last year over 300 people participated. The community effort and celebration serves to educate and foster awareness about the blind - whether they walk with a white cane or have a guide dog. There is a gathering in Republic Square Park with music, food, booths with information about Braille, games and resources.
I really wanted Zelda to participate this year and we will in the future but she's just not there yet with her cane. She is coming along nicely however!

So after I dropped the kids at Ecole, I drove along to accompany the White Cane walkers. I was feeling particularly empowered and proud and energized and then like a wave, it came over me. I sobbed. I cried for my daughter. I cried for the loss of of her sight. I pulled into my driveway and just sat - defeated. I guess I'm still not finished mourning and don't know if I ever will be.

Zelda is a superstar, a pistol, a smart, silly little girl who now says "Merci" when you hand her a cookie. In our Ecole conference, her teacher described her as "extremely popular". She explained that the classroom is a better place because of Zelda. The students are kinder, more thoughtful, more attentive. Do I ever want her to feel objectified? Of course not. Do I want her to help educate people and open their minds to the unknown? Hopefully someday. But most of all I just want her to be the most Zelda-like girl that she can ever possibly be...and I want her to be happy and have friends.

Tuesday, October 14, 2008

Dear Governor Palin...

With only 3 weeks left before the election, we are giving Mom a break from blogging and thought that we would send you a little note. Mom has been very frustrated with "that guy" - you know, the one you're running with! - as well as you and she has held her tongue on more than one occasion. BUT, with that aside, we have several bones to pick with you. Now, you may not know that we are only 3 yr old twins and Zelda is blind, but we still have our opinions at this early age in life - even if we don't say much yet:) So, here we go...

1. As we are learning to speak, we would appreciate the proper example set of grammatically correct English. Mom says that words that end in 'ing' should have those letters pronounced, as opposed to dropping the 'g' and endin' in "'in"...Also, we have a problem with putting an 'a' at the end of words, such as 'gotcha' and 'getcha' - and by the way, are those really words? We were really hoping that after 8 years of abuse of the English language in the White House (albeit we weren't alive!), we could regain some eloquence appropriate to the leaders of our country.

2. You seem to relish trotting out your kids when it's convenient to your campaign - i.e. the soldier and the Special Needs baby, but seem to be offended by the publicity given to your unwed daughter who had sex before the legal age of consent. Mom says that kids need to be taught about sex because everyone wants to do it and that education is the key. Also, we are pretty certain that Roe vs. Wade is a good thing. It's not at all about killing or not wanting babies and has everything to do with a woman's right to choose. We could have a 24 yr old brother or sister right now - and Mom says, "Thank goodness we don't!" Also, during your speech you said, "To all of you Special Needs Moms out there, you'll have a friend in the White House". Yes we will and his name is Obama...and we can tell you that not only the Moms need help, the Dads do too, and the siblings and the Health Care system and Medicaid, etc. and especially the Special Needs people themselves, so stop using us as a campaign stunt and tell us what you're going to do...How about funding for continued stem cell research?

3. We are sorry that it took you until last year to get a passport to leave this country for the first time in your life, we are already learning a foreign language and should have our very own passports soon. I don't think Canada counts and being able to see Russia from your balcony doesn't count either. It has much more to do with desire than resources...you obviously had the time to train for and fund your beauty pageants, why didn't you have a bake sale to buy a plane ticket to Europe and go backpacking?

4. And last but not least, we have met lots of city officials, the mayor, rock n'roll singers, TV news anchors, millionaires, and college professors - and you know what? Most are really, really smart well-educated people. And you know what else? None of them are qualified to run this country, so please stop thinking that you are. We really do support your desire to work outside of the home - that's not an issue for us as our mom owns her own business, we have had wonderful nannies and now go to preschool - so, it's not about being a stay-at-home mom. It's about experience and finesse.

We could go on and on and really hit upon the issues but the political journalists are far savier than we are on the important stuff. But, what we have mentioned is important to us and BTW, it's much more fun to say OBAMA than it is to say the name of that other guy:)

Thanks for listening,

Credence Paul & Zelda Nicolette

P.S. And please stop winking at the cameras - if you want to bring sexism into the debate, a male politician would really be mocked if he ever tried that! Although it's pretty cute on either girls or boys when our friends do it in preschool...

Wednesday, September 10, 2008

3 things...

ECOLE UPDATE: People keep asking how they're doing...well, okay I guess! Creed is a champion. He's a good little Montessori "worker". Yesterday when I picked them up at 3pm, I asked him if he had fun at school...he said "No Mom, ECOLE!" So, I guess he's catching on...
As for the Z-bomb - it fluctuates. She seems to be emerging from the end of summer, post-surgery tough times. She's eating well and starting to sleep better (aside from last night) but she's still a major pissant. Yesterday's Ecole-report stated that Zelda "chose not to participate in the lesson". Yikes - apparently she threw herself on the ground and did a bit of crying and such. My poor little puce. The teachers say it usually takes new kids 6-8 weeks to adapt to their structure so we're only at week 3. I let you know more after our end of the month parent/teacher conferences. Otherwise, she's doing well but is extremely stubborn, strong-willed, and crafty. Scott & Andrea, her TVI's, see her there 2x/week for the pre-Braille lessons and such. Gene, her O&M teacher - that's Orientation and Mobility - sees her at outdoor time once a week. Soon she'll be getting her first long white cane! Woo-hoo!

TWINTUITION: I have been talking a lot more to Creed about how Zelda sees. He likes to hand her things and tell her what to do, etc. and I've managed to convince him to actually place the item in her hand instead of just thrusting it at her. The other day, he found an interesting old piece of raffia and ran up to her saying "See, Zelda, see!" while dangling it in front of her face. So now we're talking with him about Zelda seeing with her hands as opposed to looking with her eyes. When we travel by car, we always count cows and such, pointing out the sights to both kids - describing in detail for Zelda. I use the word "see" with her as much as I do with Creed - it's just different, I guess.

OBSERVATIONS FROM OTHER KIDS:
One day this summer, Zelda broke her glasses and she went to camp without them. When I picked her up that afternoon, a little girl informed me that "Today Zelda didn't have her glasses so she saw with her hands!"

And the other day upon picking Z up from Ecole, her classmate informed me that she thought it was cool that Zelda held her foot on the slide instead of holding her hand ???

Wednesday, September 3, 2008

Happy Dinosaur-day...

Creed has this habit of attaching "day" to many words, things and experiences...it all started with "water pool-day" this summer. It has also given us: California-day, dog poop-day, dancing-day, cookie-day, big bed-day, and the latest, among others...Happy Dinosaur-day.

This past Saturday with no plans on the horizon, I opened our local weekly Chronicle and chose a visit to the Dinosaur Park as a morning outing. Well, it's my new favorite kitsch place to take kids between the ages of 2 and 8 - a perfect place for an out-of-the-way birthday party or field trip. It's about 20 miles outside of town, down a dirt road past an RV park. Basically it boils down to a "nature trail" sprinkled with varying sizes of fiberglass dinosaur models and perhaps a small sign/description. There's a play scape at the end of the trail, a pseudo-dinosaur dig AKA sandbox and a super-duper gift shop that has every dinosaur inspired souvenir imaginable. Aside from Creed's sheer glee in Dinosaur-day, Zelda had an absolute blast following the trail. Z-bomb is very much in a phase of wanting to walk by herself - absolutely no holding hands! She perfectly navigated the dirt trail with all of its twists and turns, roots and rocks. Whenever she strayed into the brush, she quickly re-negotiated her path and continued on, giggling and at times running with delight.

On Sunday, Evan and I had decided on a family "Road Trip-day". We set out west with San Angelo as our destination...the twins were amazing. We sang, chatted, and stopped at antique stores, junk depots, and flea markets along the way - not to forget my personal favorite place to shop: Venison World in Eden, Texas. Whoopee! What an adventure! We left at 9am and were home by 9pm - with 500 miles under our belts! Creed and Zelda have now been officially baptized into our Junk Run Religion...


Oh, and one more thing, Ecole is going really well - more on that later, I promise.

Monday, August 25, 2008

Ecole...

So, today is their first official day of preschool. After a long search, visits, interviews and such, the twins started today at their French immersion Montessori school. We've known from the beginning that we always wanted to do Montessori so it was just a matter of finding the right fit and the right waiting list. This particular school is extremely petite - only 20 children with 3 guides who only speak to them in French. So, this summer I've been busy translating Z's books into French and then we send them off to the Brailler - she should be doing French-Braille in no time flat. As we left them this morning to run off to our photo shoot (more on that later), Creed walked in and said "Bonjour" and got to 'work' and Zelda was busy mapping out the classroom and stopped just long enough to say "Au revoir." I hope this works because we've signed on for the 3-year long haul until Kindergarten.

FYI:
"The Montessori environment contains specially designed, manipulative "materials for development" that invite children to engage in learning activities of their own individual choice. Under the guidance of a trained teacher, children in a Montessori classroom learn by making discoveries with the materials, cultivating concentration, motivation, self-discipline, and a love of learning."

I'll let you know tomorrow how the first day of Ecole went...

Wednesday, August 13, 2008

BFMV 2008...continued...

First off, thanks to all for your best wishes and for thinking of Zelda.
Second...things I absolutely love about southern California: Trader Joes, Rockin' Kid Shop in Eagle Rock, 6 kiwis for $1.69, the green, green grass, the beautifully appointed renovation of Huntington Hospital - so glamorous, so stucco, so well landscaped...there's more...

DAY 5 - BEACH, we headed out early to go down to Venice Beach, call friends, swim in the ocean, visit galleries, etc. A perfect day despite the fact that Zelda has now learned how to throw a perfect tantrum - kicking, screaming, uncontrollable agony for all involved. The water was lovely, the beach was sandy - it was everywhere: in their ears, in their hair, in their diapers, in their P-suits (the word that Creed has designated for bathing suits!) Creed loved the ocean, Zelda not so much. I love the ocean, Evan not so much, as witnessed below from his beach attire.
We love the galleries on Main: Urban Country and Obsolete. If Urban Country is well- edited, then Obsolete is sheer opera. So inspirational...we hit Abbott Kinney for a bit of shopping and ate french fries on the 'boardwalk' - such as it is.


Speaking of tantrums, that evening I discovered a huge hematoma looking bruise on my shin with an engorged, swollen vein popping out. Evan was afraid of a blood clot or at worst, an aneurism that would kill me and leave him alone to raise 2 hellacious toddlers. He made me walk across the street to the ER and when asked what had happened I could only recall Zelda perhaps kicking me with legs flying as I removed her from her beloved swing. Four hours spent in the ER was not very glamourous...

DAY 6 - DOWNTOWN to Robertson to do retail research, we visited Lisa Kline, Kitson and Zelda's preferred shopping destination of Chanel. As we strolled past The Ivy, coming up on the entrance of the Chanel boutique, Zelda made a deliberate turn to enter on her own. It was quiet (no one is shopping these days) and she was greeted by the sales associate who stated "This girl knows what she likes..." Oh, her tastes are expensive! She then proceded to enjoy the music while babbling and smiling with the sales girls and checking out the marble steps and black and white lacquer interior of the beautiful shop. The girls loved her and offered to babysit while I went next store for lunch. Needless to say, la petite Z had found her niche and I see double C's in our future!
We then checked out the Museum of Neon Art downtown and several galleries.
The evening turned out to be quite fabulous. Thanks to the good friend, Jacqueline, of my fabulous friend, Stephen Moser, we found childcare so we could attend a chic little cocktail party in Malibu. We dropped the twins off with the wonderful Jacqueline, her family and babysitter so we could make the drive to the sea. It was a very generous and gracious offer that gave Evan and me some alone time.
The occasion was a surprise 40th birthday party for Evan's cousin, Michael, thrown by his partner, Sean. The two are quite the jetsetters and although they live in Vegas, the party was in a fancy little Malibu home with a view to die for and a guest list to match. We met a head designer for Versace and her partner who's an editor for Italian Vogue, the creative director for Bally, Oprah's decorator and home makeover guru, a producer from Extreme Home Makeover, a wild LA psychic, and an actress who I adore who's been on the Gilmore Girls and Samantha Who. Oh, and there were others from Milan, Hong Kong, London, Dallas, LA, Vegas and of course, Austin...

DAY 7 - DOCTOR'S APPOINTMENTS and a checkup for Zelda filled the morning...we then headed off to Fullerton, near Anaheim to visit my cousin Charlotte and her 'water pool'. Creed was in heaven. Zelda enjoyed climbing her stairs and was introduced to the music of The Beach Boys. It was wonderful to have a home cooked meal and to catch up on family news.
That evening continued with a bit more fabulousness for Evan. He was able to attend the after-birthday party for Michael with a smaller cast of characters at the swanky Chateau Marmont in Hollywood. I stayed home in our little room at the RMH and the twins I watched the Olympics. Lots more 'water pool" excitement as Michael Phelps won more gold medals!

DAY 8 - ROSE BOWL FLEA MARKET was our early morning destination. The twins are antique show/flea market veterans at this point so we got them some snacks & bottles of water while Evan and I looked for that special 'orphan' (that item that everyone else neglects but you fall in love with and take home) among the vast acreage of treasures. It was hot, hot, hot and we headed back to RMH to nap. Our last afternoon was spent in downtown Pasadena. If only there was a way we could afford to live and work in this glorious little city, we would buy this building, live up in the loft/studio space and open a gallery below:


DAY 9 - HOME AGAIN, HOME AGAIN JIGGETY JIG...superstars at LAX

Tuesday, August 12, 2008

CAL-EE-FOR-NAH...

AKA Our Big Fat Medical Vacation 2008.

We're baaack...and none too soon. We're exhausted. To begin at the beginning:

DAY 1 - TRAVEL, the plane ride from hell, with twins in car seats, I sat in the middle seat with Creed by the window. Evan sat behind me with Zelda near her window. Despite their espoused excitement over "Airplane, Caleefornah, and Beeech", the plane ride was not happenin' for them. Either they complained to be with the other parent or were just unhappy. Z-bomb lived up to her name by throwing a fit and kicking over the drink of the kind Korean man sitting next to me. I offered to pay for dry cleaning his Dockers but he declined by explaining he had small children of his own.
We happily arrived at our temporary home in Pasadena, the lovely Ronald MacDonald House, to find that our room was about 10x12ft complete with one double bed - for all 4 of us. We justified our accommodations by repeating over and over that there are people who raise entire families of 8 in places that small. The first night we slept all together in the bed - Evan and Z with their heads on the pillows and Creed and I with our heads at the foot of the bed. I kept urging him to go to sleep with "Let's nap near Daddy's feet". The next day we put a Pac-n-Play in the closet for Z and another in the room for Creed. Needless to say, we spent very little time in the room. Part of the beauty of the RMH in Pasadena is that they have an amazing yard with a play scape, a sandbox and real green grass - I add that for the benefit for those who live with the scratchiness of what they call a lawn in Texas.



DAY 2 - SURGERY, it started with a phone call. Thanks to a 2 hour time difference, the twins were awake at 4:30am. Yikes! But they had pushed up Zelda's time, so we rushed over to the hospital. The exam went well but half way through, Dr Tawansy came out to tell us that the scar tissue build up in Z's right eye was so great that it had continued to detach her retina. The right retina was only 1/3 attached. He went in and cleaned out the scar tissue and reattached the retina leaving her with stitches and oil to help it heal. Now, we'll do eye drops 4 times a day, gradually descending in quantity over the next 3 months.
Zelda did amazingly well. She woke up from the anesthesia all groggy and sweet - nothing like the fighting little animal from a year ago. We took it easy for the rest of the day.
So, what now? Oh, Tawansy wants us to come back once a year. Also, in a few months, he'd like Zelda to have an MRI of her skull and orbits to make sure that everything is growing symmetrically. We already know that she has micropthalmia - her eyes are tiny. But we need to make sure sure they are growing and to measure the difference in their size. And then what? If needed, we would take her to an ocular surgeon who would fit her for a prosthetic shell, a kind of clear lense that would keep her eye socket stretched so it would grow accordingly. So many things to learn...


DAY 3 - MUSEUM visit after an early morning follow up with Tawansy at his office. We went into LA to see the new building of contemporary art at the LAMOCA. Creed seemed to prefer the Ellsworth Kelly works but also enjoyed the giant blue balloon "puppy" by Jeff Koons. Zelda, on the other hand, liked Koons' sculpture of Jacko and Bubbles, the Chimp. I guess there's no accounting for the taste of your kids. They did have a grand ole' time in the Children's Gallery.
For dinner, Evan and I had the crazy notion that we could actually take the twins out for Mexican food. Ha! We quite desperately downed our margaritas as water spilled, chips went flying, Zelda jumped on the banquette and Creed ate under the table. And we really ARE attentive parents, I swear!

DAY 4 - GARDENS at the Huntington were in bloom - actually I think they always are...really, really lovely. There was an interesting exhibit of landscape/peoplescape photography of LA. And of course, there was a Children's Garden! Z and C enjoyed the water features and we enjoyed the balmy 85 degree sunny weather so different from the 100 degree hell of Texas.

Tuesday, July 29, 2008

Zelda's vacation...

"Exam under anesthesia both eyes. Fundus photos. Fluorescein engiography both eyes. Possible Pars Plana vitrectomy w/ membrane peeling either eye."

So, we leave for California on Sunday. Her exam is on Monday. Just keep the Z-bomb in your thoughts. I know she'll be fine but it still sucks.

And what are you doing for your vacation?...

Monday, July 28, 2008

Oh so "Fortunate" again...

Once again, Evan and I have been named to the list for "Style Makers" of the Fortunate 500 in our fair town. It's always a humbling and pleasant surprise that invokes a bit of reflection...
One aspect of our good fortune lies in our neighborhood. Despite the fact that our family of 4 currently lives in an 800 sq ft bungalow that was built in the 1930's (more on the "Project" later) and we don't have a back yard for the twins to play in...it is urban living at its best. We live less than 100 yds from the most happenin' street in town.

Our evenings go something like this: after dinner and before bedtime, we take a family walk.
-We check in at my boutique to see how they did for the day and as we pass by the other shops, we wave and share news with their employees. Creed & Zelda like to run into the salon next door and visit the girls.
-On up to Jo's where the employees will give Creed his nightly banana and we chat with whoever's around...followed by a tour around the outdoor bar at the San Jose and a hello to the fishes in the fountain. No time for cocktails as there's music across the street at the Continental Club - that means dancing on the sidewalk to some country swing.
-Up to Gueros where the garden is filled with diners waiting for a table and more music! We dance to Ponty Bone or Los Flames - Zelda jumps and smiles and Creed runs and drums.
-Back down the hill to the terrace of Mars where Olivier Giraud is playing guitar with Paris 49 - we get our French fix of music for the evening.
-Another stop at Jo's where the Vampire Weekend/Spoon wannabes - i.e. hipster guys in skinny jeans are playing music before they show a film in the parking lot. Creed likes to say "Mosh pit!" and imitate them with his air guitar.
-A final stop at El Sol y La Luna where a wonderful cumbia band with a mariachi guitar invites us to dance with the other patrons....

So yes, we are fortunate...we may not have a swing set or walk-in closets (at least not yet!) or our own swimming pool, but our kids will grow up with music, friendly faces and a neighborhood filled with adventure.

Thursday, July 17, 2008

Cha-ching...

Something I just learned...did you know that both current Canadian and Mexican series of banknotes have raised symbols - known as tactile markings - for easy identification by the blind or visually impaired? European currency uses different sizes and colors. It's only US currency that is lame...No matter how organized a blind person in America may be by folding their bills and such, they still must initially depend on a seeing person to distinguish between the differing amounts of the bills. Get with the program, America!

I am looking forward to that commemorative Louis Braille coin however. And it will have braille on it. I think it will be out by the 200th anniversary of his birthday in January.

UPDATE: Stay tuned for our 3rd Annual Big Fat Medical Vacation...that is, we'll be heading to Los Angeles for the yearly eye doctor visit in August. Zelda needs to see her retinologist. California here we come...

Saturday, July 5, 2008

Boom, boom...

That's how Zelda sees fireworks.

So, the twins have been around for three 4th's of July...and maybe they are just starting to get the whole 'holiday' thing. They are grasping the party-idea, picnics, special events, etc. We did the super cool neighborhood parade - Zelda got to pet a chicken! - then there was the big pot luck in the park and lots of time spent in the 'water pool'. I think we'll have to do our own float in the back of Evan's old Chevy truck next year. From our house, we can see at least 4-5 shows of fireworks across the city. Creed watched for about 10 minutes and with prompting, said they were "pretty". Zelda spent the time practicing her curb jumping and said "Boom, boom" every now and again.

I had a 4th of July once that was magical. I was 16; it was summer camp. We were sitting on the trunk of a car in a grocery store parking lot and watched the fireworks over the horizon of a teeny, tiny town near Califon, New Jersey. I remember the air, I remember the company and I remember seeing those flashes of colored light in the sky. Another memorable one was on an inlet in a small coastal town in Maine: little sailboats, good friends and beautiful modest fireworks over the bay. Then there were several down on the mall in DC complete with pot smoke, the Steve Miller band blaring from a boom box and the memory of the Washington monument against a beautiful display of color.

I know Zelda will someday have those moments. She'll have the friends, smell the night air, and capture those slices of life. But I mourn for her. I want her to see the fireworks. I want her to see the lights of Paris when looking out over the city from Sacre Coeur. I want her to squeal with delight when she sees the fireworks on New Year's Eve in Florence. I want her to see the Northern Lights of a summer in Maine - the way they pulsate blue, green and hazy white. I want her to see a lunar eclipse while laying on her back in a canoe on lake or a meteor shower from her sleeping bag in a field on a hot August night.

I don't give a damn about Zelda missing out on cartoons or fashion(!) or make-up or haircuts or driving or even the Mona Lisa. She'll read and listen to TV or movies if she wants to. She'll travel to foreign countries, visit museums and eat in the most amazing restaurants in the world if I have anything to say about it.

But it's missing those damn fireworks, those sunsets, those silent city lights that really, really, REALLY pisses me off.

Thursday, June 26, 2008

Aqualung...

"Sitting on a park bench...
snot running down his nose..."

Thanks, Jethro Tull...that image has remained with me since 1972 and now has entered my real life - on a daily basis. I have snotty nosed kids. Every day, clear to opaque, to yellow - no green yet. Sorry I have to be so graphic but one of our newest tasks is teaching them to blow their noses or at least letting us wipe them. When, oh when, will they dry up? Thankfully, aside from major post-nasal drip in the morning, they have no other symptoms.


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On another note: we are on something like day 30+ of insane temperatures. These days, 95 degrees is considered temperate. Most days around 5pm are between 98 and 102...Creed cries for the "water pool" and Zelda wants to swing in the "hemmok" - and so do I, with a caipirinhia in hand.


Tuesday, June 17, 2008

Sleep away camp in Maine...


No, not quit yet. BUT, Creed and Zelda did start their summer Montessori day camp yesterday! They'll go 5 days a week for 7 weeks. We dropped them off at 8h30am with no tears (at least not on their part) and their super dedicated lead guide checked in with me at noon. Zelda had eaten her whole lunch - Creed hadn't. Zelda was napping on her little cot - Creed was watching the others kids nap as he desperately tried to keep up his head from nodding. They had a great day. It helped having Mariellen (Z's TVI - that's Teacher of the Visually Impaired) attend the first hour and help acclimate her to the classroom. These kids are freakin' superstars.

While they were at camp, I attended the opening remarks at Texas Focus - a conference for the Texas Association of Parents of Children with Visual Impairments. Also known as TAPVI. The opening speaker was the executive director of NAPVI - hope you're following the acronyms... Anyway besides the organizational business, on a more personal note, she spoke of her son - who as a child developed cancer of the eye. He's now pre-med, a junior at Cornell, and studying in Hong Kong this summer. Another superstar...

Wednesday, June 11, 2008

Possessed by aliens...or Zelda has blue eyes...

So, on Sunday, upon waking up from her nap, Zelda had a seizure. It went something like this: She woke up fussy and burning up - as if she had a fever spike (both twins have been exchanging a snotty nose for weeks). Then she got very quiet and stood very still. Then she curled up on the floor. Now up until then, those things can all be normal. Music was playing and she often quietly listens. She likes to fake napping and often she'll say "I sleep" and lie down. But this was different. I spoke to her and she didn't respond, not to the offer of milk, or to play with my keys, or to the "B's" - aka the Beatles. I knew something was up. I then saw the symptoms (her typical seizure-like signs): she smacks her lips softly, she gets pale, her lips turn a dark brownish/red, and her hands feel like jelly. I rolled her onto her side, rubbed her back and spoke to her and called for Evan. We gave her an extra dose of Keppra. (She takes 1.5ml, 2x/day) She continued by gagging a bit and had shallow breathing but all of this lasted just a few minutes. Then she fell asleep on my chest for an hour. AND we didn't call 911 - for the very first time, we handled it ourselves. It still sucks, it's still scary, and I still hate that this continues to happen. We gave her Tylenol and her fever seemed to drop. They say these are 'breakthrough' seizures, as she doesn't seem to have them when she's feeling well. I'm just frustrated with the pattern.

BUT, here's the weird part: when she woke up, her eyes were open - she rarely opens them. And they were blue! Her irises were actually a beautiful shade of blue and there was a dark pupil-like spot in colored pool! My little girl is a blonde-haired, blue-eyed beauty! On the rare occasion when Zelda opens her eyes, we'll see white with a dark dot. We have photos of her as a baby with her eyes open and I always assumed her eyes were black. BUT NO!!! They're blue...Evan confirmed it, he saw it, too. I thought I was dreaming. I thought she was hosting a blue-eyed alien. It was magical and I haven't seen the color since...

Saturday, June 7, 2008

RIP's and Bienvenues...

- RIP YSL: Yves Saint Laurent, the great French couturier, prodigy of Dior, and avid supporter of women wearing pants, died at the age of 71 in Paris. Each time I wear a man's tuxedo to a formal event, I think of him.

- RIP Allie: beloved dog of our friend Jason. She was a dear, gentle dog who would visit and let the kids roll all over her. Creed named his stuffed puppy "Owie" after her.

- BIENVENUE to the newest set of preemie twins: Emmanuelle & Max, born to friends Merritt & Pierre on the west coast. Can't wait to meet Manu & Max...They'll join other sets of twos in our world: Isabel & Michael, Jack & Alma, Jack & Ellie, Harriet & Maxine, Caitie & Georgia...we'll all have to have a party

And speaking of parties, tonight is our "50/50" party: A century of style. Evan and I have now both turned 50 in the past 2 months. And I'll tell you all now, it only gets better...

Thursday, June 5, 2008

Spring medical sweeps...kicking off the summer season...

So we just did a week of doctor's appointments. Most kids have a pediatrician and maybe a dentist. Zelda and Creed have a neurosurgeon, an Infectious Disease doctor, a pediatric opthamologist, a neurologist, a retinologist, as well as a retinal surgeon in LA and a Toxo Team in Chicago. Oh, and their pediatrician. We'll save the list of Zelda's therapists for a later entry.

Anyway, last week was our trip to Houston to see our favorite Tiki Gods - the neurosurgeons. As it turned out, the residents & interns have moved on and the other head Tiki has gone off to San Antonio so only one lone god remains. The twins have to check in every so often and have head CT's to make sure that their shunts are draining the fluid from their little brains in an appropriate fashion. They have had more CT's than I can possibly count so this time we were well prepared despite the fear of having to sedate them so they would hold still long enough. Anesthesia is definitely not their favorite experience nor is it mine when a 2 year old is involved. Luckily, they managed to avoid the sedation...could we possibly make it through 2008 without anesthesia? Their brains look great and the shunts are working. Creed's ventricles have actually shrunk and Zelda is perfectly stable. They will have these shunts throughout their entire lives and we just always will have to be aware of possible malfunction. But so far, so good!

This week, we saw their ID doctor. We check in with her to follow any reactivation of the evil Toxo Parasite. They'll live with this for their whole lives as well. C & Z are doing great! Having had the twins on their drug "cocktail" for the first 17 months of their lives has hopefully drowned those damn bugs - as least for now.

And then we saw their opthamologist...Creed's strabismus seems to be evening out. Months ago, his right eye - which has a scar on its retina from the Toxo - would turn in on occasion. Now it hardly turns in at all. Creed was a perfect patient. He performed like the perfect little show monkey - taking the tests, sitting still, curious and quiet. La petite Z-bomb earned her name accordingly. She exploded. No one can get near her eyes. She seals them closed and will have to be sedated this summer for a retinal exam. Damn! 2008 will not escape the anesthesia curse...If the Toxo was to rear its ugly head, it would most likely appear in the eyes so we have to be vigilant.

Anyway, we're readying the twins for their Montessori summer camp program. That means a visit to the pediatrician for their immunization records...

Friday, May 16, 2008

Elvis really is in the building...

So, just when retail gets me down - as it does most days...no one is shopping, the temp is rising in the 90's, I am low on inventory, I am so very cash poor...in walks Elvis Costello, his wife Diana Krall and their 18 month old twin sons, Frank and Dexter. They spent a bunch of money on vintage cowboy boots, interesting jewelry and assorted clothing. So very awesome...Who cares about movie stars when we have the coolest musicians shopping on South Congress...


Addendum to Mother's day Post...
So, here are my problems with Erma Bombeck's little ditty...

1) I don't consider either of my children to be 'disabled'.

2) I am more a woman of Science than of God.

3) I don't believe in the whole angel hoo-ha.

4) I don't believe in the 'my world' - 'their world' differentiation.

5) BUT I do like to think of myself as their patron saint!

Tuesday, May 13, 2008

Happy Mother's Day...

My Mother's day dedication to all of the "Toxo Mamas" everywhere:
Just ignore what I see as the obvious problems with this essay and take a minute to read it for what it's worth...

The Special Mother

By Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The patron saint will be Cecilia"
"This one gets twins. The patron saint will be Matthew"
"This one gets a son. The patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child"

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter ? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm giving to her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God Smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a common woman whom I will bless with a child less then perfect. She doesn't realize it yet, but she is envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says"Momma" for the first time she will be present at the miracle and will know it. When she describes a tree or sunset to a blind child, she will see it as few people ever see my creations."

" I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her patron saint?" asks the angel, his pen poised in mid air."

God smiles "A mirror will suffice"

Monday, May 5, 2008

Blackbird singing in the dead of night...

When I was pregnant with the twins, I used to sing 2 songs to my full belly. One was the Mockingbird song: "Hush little baby, don't say a word..."
and the other was this Beatles tune:

"Blackbird singing in the dead of night
take these broken wings and learn to fly
all your life
you were only waiting for this moment to arise.

Blackbird singing in the dead of night
take these sunken eyes and learn to see
all your life
you were only waiting for this moment to be free.

Blackbird fly, blackbird fly,
into the light of the dark black night."

And on another note, I just signed up for my Intro to Braille course offered by Hadley School for the Blind. I'm very excited and can't wait to be able to write little notes to Zelda in braille and put them in her lunch box - that is, as soon as she actually has a lunchbox...and can read...

Tuesday, April 29, 2008

Pay it forward...

it's that time again. We're going to "March for Babies"...raising money for the efforts of the March of Dimes. This special organisation supports research, education, and grant funding for issues pertaining to prematurely born babies. Someone asked me the other day why I thought there were more premature babies being born than ever before. Here's my theory and it may have something to do with it: Medical science has come so far in saving the life of even the tiniest baby when born early...in the past, these babies would have died. There would be no talk of "I was a preemie". There would only be talk of a baby being born too early and who died too soon. Now that these little ones are surviving, the doctors, surgeons, nurses and specialists all work together to help create a healthy baby that can face the future without hopefully too many residual issues from a too early birth.

So why do we walk? We walk for...Enzo who was born with spina bifida and who only lived a few months. We walk for Aidan who was born with a kidney disorder and spent his few short months of life on dialysis and was Creed & Zelda's very first friend ever. We walk for Bailey who somehow contracted every preemie issue that an early birth can suffer from in the NICU. She never went home. We walk for Frederic who lived only an hour. There are so many more...

I'm trying to teach my kids to "Pay it forward". They're alive. So many people helped them get to this point. Now we need to help others.

If you have a chance, please donate to this worthy cause...

Wednesday, April 23, 2008

Weekend update...

with Credence Paul and Zelda Nicolette. Evan's dead dad had this platitude that he used to repeat "Run, run, run...see Bosco eat snakes." I think it meant something like "running around like a chicken with its head cut off."

This past weekend went something like this...
- We had friends arrive in town from Dallas to stay at our 'guest house' next door (more on that later). They stayed in Austin, we took off for a road trip.

- On Saturday, we headed out on a 3 hour drive to Granbury, TX for the Tyler & Teresa Beard party. Our dear friends who were the epitome of all things western design both passed away. Teresa took her own life a little over 2 years ago and Tyler (the well-known author of all of the books about cowboy boots) died in December. They were an amazing couple and are sorely missed (more on this later, as well). There was a party with dinner, drinks and stories told at a country club (?) outside of Ft Worth. Needless to say, the twins were the only kids there.

- We spent the night in an 1867 dog trot log cabin where there were ostriches (that Creed decided were actually 'cows'). We roamed on the range, tried to learn to lasso, and generally enjoyed just having a big yard to play in.

- On Sunday morning, we drove to Waxahatchie to visit the Webb Gallery (www.webbartgallery.com) owned by our friends Bruce & Julie. They featured a show of vintage carnival banners and lots of super cool stuff. When they're not out finding oddfellow paraphernalia and such, Julie teaches belly dancing and Bruce gets more tattoos. La petite princess Z found herself a new throne while Creed took a tour of downtown, accompanied by Allie and Moby.

- Once back on the road, Creed decided he needed to walk again, so our next stop was the old flea market in Waco - yikes - a 'perfect' place to stock up on used baby toys, bootleg DVD's and this Elvis:
- Then finally on the homestretch to Austin on I-35, we just had to stop in Sun City of Georgetown to visit Nana & PopPop so the twins could run around the 'hood to the delight of the senior citizens.

Home again home again jiggity-jig, just in time for bed...
more exciting news to come.

Thursday, April 17, 2008

B-R-U-C-E...

so I'm from New Jersey, if you didn't already know that. Before this past week, the last time I saw Bruce Springsteen was about 30 years ago at the Spectrum in Philly. It was the "Darkness on the Edge on Town" tour. The Boss was amazing, jumping and running across the stage, screaming and singing his unforgettable lyrics in his gravely voice...Clarence wore a white suit and Nils Lofgren wasn't even playing with him yet. Hell, he wasn't even married to Patti Scialfa yet and hadn't produced those 3 teenagers. People stood on their seats and he played for hours. I saw him twice that tour. I was in college.

We saw him in Houston on Monday. Again, he was amazing, just more strutting than running. Clarence wore black and has dreads down to his waist now. Patti was at home with the kids. He played for 2 1/2 hours and was joined by our friend Alejandro Escovedo for an encore song. And I swear I have never in my life seen a bigger crowd of 40 yr old + white people in one concert hall.

But there's just something about Bruce that brings tears to your eyes, that makes you feel that it's okay to be an American and that there's still hope for this country. 'Cause whatever you may think of his music, he's the real deal.

And I swear I got his shout out to "the one Jersey girl in the audience" among all of the Texans...I saw him smiling at me. He did, he really did...

Wednesday, April 9, 2008

Hot Rods & more...

Days turn into weeks, weeks turn into months...and it's just another event down here on South Congress. This past weekend was the Hot Rod show - wheeee!
La petite Z, Rod and his new Hot Rod!

Creed will thank me for this photo some day...

The girl in black.



This weekend is a birthday party, an art opening and of course, more visitors.

Tuesday, April 8, 2008

Helicopter hovering...landing pad in site...

- So, first we ask all of our friends where their kids go to school, do our research and investigate any schools we've read about, etc.

- Then we narrow down the search and call the school to make a tour appointment.

- We attend the visit and see if we like them, see if they like us and see if it is even a possibility.

- Then we fill out the application form and put down anywhere from $50-100/per child just to get on the waiting list.

- And we wait...we juggle timing. "If we get accepted to Harvard can we delay until we find out if we make it into Yale? And then there's Princeton, they may have 2 spaces but won't let us know until May....and I hear that MIT really wants a blind kid in their program..."

- Here's the part that hasn't happened quite yet (but we're getting close): We get accepted and we put down the $250 or so enroll fee/once again, PER CHILD.
- School should start late August/early September...anywhere from $650-800/PER CHILD!!! per month...

Oh, and did I mention the summer camp program search? Yikes....

Wednesday, April 2, 2008

Oh, and by the way...

my daughter is blind. Sometimes I mention it and sometimes I don't. We are involved in the great big pre-school hunt. Wow, it's crazy, interesting and a challenge. Of course, this is not just about Zelda - it's about finding a school that will be appropriate for Creed as well. In all of Zelda's teacher meetings in the past 6 months, they have adamantly expressed their desire to have her main-streamed - as do we. She'll just be the 'blind kid' in the class - I guess for the rest of her life. As other kids learn to read print, she'll be learning braille. As kids learn shapes and colors through visual recognition, she'll learn them through touch and conceptual relationships. As the other kids intuitively follow the teacher's lead by imitation, Zelda will be doing it through hearing and her own heightened intuition.

We want a small school, one with a good teacher-student ratio, one with a structured curriculum so that there will be transitional cues between activities. We've looked at schools for kids with 'special needs', PPCD's (public preschools for children with disabilities, Waldorf, 'faith' based, international and just good ole' daycare. We have decided that Montessori is the way to go. So now, we are on waiting lists, visiting and interviewing. We usually tour the school first and decide that it could be an option for the twins before I drop the 'blind' bomb. I am then usually greeted with a quiet response of "Oh, we don't have any experience with blind students." I then respond with "Hey, me neither!" and the ice is broken - well, usually.

I am currently engaged in an email exchange with the director of our first choice school. We have visited and the twins really took to the environment. It would be great! So now, I forward the staff articles about "The blind child in the Regular Preschool Classroom" and explain that Zelda will have Scott, her VI who will visit them and help guide how to integrate her into the mostly visual activities. I am the advocate, the dreaded "helicopter" parent, busy convincing the world that they can accept her and not to be afraid. They all have a lot to learn from Zelda - Evan, Creed & I learn stuff from her everyday.

Keep your fingers crossed...

Monday, March 24, 2008

I just realized...

that exactly 3 years ago today, we got the call. Our donor was ready and we had to fly to NYC from Texas the next day for retrieval and Evan's 'offering'...it was a Thursday, we left Friday and the meeting of DE & Evan's sperm took place that Saturday - my 47th birthday! We took a car service at 6am out to NJ to the clinic. The waiting room of RMANJ was packed. That evening we went to a cocktail party and when we got back to the apt, Evan had to start giving me the progesterone shots - he was so nervous he almost puked! Of course, I was busy numbing the injection site with a bag of frozen peas. Then 3 days later, we went back out to the clinic for the transfer and the rest is history. (I remember drinking so much FIJI water and feeling so bloated and miserable because I had to pee so very badly right before hand. An Enya CD was playing and I kept thinking "Save the whales, save the whales, save the whales". When they finally finished the procedure, I just let it all out - all over the floor. TMI.) We spent 10 days in NYC in a friend's 5th floor walk-up and I remember visiting the art galleries in Chelsea the day after transfer. The Basquiat show was in Brooklyn. We ate steak-frites at Schiller's. I bought a skirt at Comme des Garcons. Talk about not laying low...
But they put back 4 and we came out with 2.
Whew - now the twins are 2 1/2 and we're looking at pre-schools.
With so many thanks to our anonymous donor...
What a long strange trip it's been and promises to be:)

Monday, March 10, 2008

My little monster...

Oh my oh my, I just had to add this story. Evan, Manu, the twins and I had to run an errand at Best Buy this weekend. It's a fairly heinous store but it has big open spaces and Zelda loves to stroll through wide aisles in places with very high ceilings. She loves Home Depot and Target (FYI, I absolutely refuse to go to WalMart).

Anyway, Zelda was strolling around with her arms outstretched in front of her. We are trying to get her to hold her hands together with her outstretched arms to cue her on approaching obstacles. As always, she was walking around fearlessly, like a superstar - head down, chin fairly tucked, arms out stretched - when this guy starts laughing and pointing. "Look at that little girl walking like a monster, she's walking like Frankenstein!" "Isn't she cute?" I tend to just smile when people comment on how "she's SO interested in her feet!" or "she looks sleepy" - because her eyes are usually closed. Well, this time the guy just wouldn't shut up so I just had to lay the zinger on him "No, she's not pretending to be a monster, she's blind." Hit by this ton of bricks, he proceeds to apologize profusely but then throws in Jesus! He touches her on the head and starts talking the whole "God Bless" thing, etc...you know the rest...

Frankly, I don't know what was scarier: the part about the monster or the Jesus trip.

Mano à mano...

So, Manu is visiting from Paris for a few weeks along with Cécile. We just figured out that we've been friends for more than 20 years - yikes! It's SXSW and the crowds are rolling in. Creed loves to drag "Mano" - as he calls him - around by the hand and show him puppies. And Zelda has taken to saying "Oui" when asked a yes or no question. Now if only we'd find out if they've made it into the French Montessori pre-school for the fall. Otherwise, they're off to live with "Mon Oncle Mano" in Paris.

Thursday, March 6, 2008

Mary Freakin' Poppins...

So, the twins don't eat candy. It wasn't a conscious plan, we have just avoided it thus far and I guess it's been a good idea. They don't even know what it is. I am sure they will know soon enough but for now at age 2 1/2, we're in the safety zone. The other day, we took a stroll through the lovely "Big Top" candy store down here on South Congress and the twins just thought every little thing was a toy. Creed liked organizing the jawbreakers and lollipops and Zelda liked running her hands through the cellophane-covered hard candies. AND, they didn't ask for a thing - because they have yet to know the evils of "candy". However, they DO know and love our nanny who is also named "Candi".

The other day at Central Market, the Easter display of chocolate eggs and candy-like stuff was displayed in full-festive mode. Creed likes to see what he can grab within reach from his strap-down position in the cart. Well, as he reached for some of the sugary delights, I was about to say "No Candy!' but I can't. Candi is good, the kids ask for her, they kiss her hello and watch her out the window when she leaves. "No Candy" whether ending in "y" or "i" is not an option. So instead, out of my mouth came "No bonbons, sorry Creed, no sweets!". A man standing nearby looked at me like I was crazy...no bonbons, who is this woman?...Mary Freakin' Poppins?...

Thursday, February 21, 2008

Did you hear the one about....

So a few weekends ago, Evan and I attended a seminar called "Through your child's eyes". It was about raising a blind or visually impaired kid. There was a lecture by a 100 yr old doctor, some new technological info, a simulation experience and a chance to meet other parents. The most informative segment was the panel discussion: 2 VI kids, 2 parents and a woman who is visually impaired. The kids were amazing! The moderater proposed questions to the panel and each person would respond.

When asked about their biggest personal challenge...A soft spoken middle schooler - whom I assumed was from India (not that it makes any difference but it's important to emulate the cadence and lilt in his speech) - responded that kids at his age can be very cruel. He said that he has chosen his friends on the basis of their 'disabilites'. They all sit together at lunch. "I have one friend who is very skinny - but he isn't anorexic. My other friend is very short - but he's not...(a dwarf, someone piped in). Another friend has leukemia." He then added quietly, "Do you know the story of the blind man who has a friend with no feet? The blind man has feet and his friend can see."

I think this kid is related to Gandhi.

Tuesday, February 19, 2008

O'Puppy...Obama...

Creed's favorite word at the moment is "Puppy". Sure, he says lots of other stuff, but the first word out of his mouth in the morning is "Puppy". When I walk in the house, he points to the outside and says "Puppy". When he goes to bed at night, he says "Puppy." We try to let him see puppies as much as possible. This past weekend in the glorious weather at Town Lake, it was a veritable puppy fest...

So then, the other day he heard someone say "Obama". (Disclaimer: Personally, my heart belongs to Hillary, but I will support whoever gets the Democratic nomination.) Creed then would say "Obama" both randomly and on command with a big smile on his face. The true test came when I asked him who he wanted for president. He hesitated and smiled and replied "O'Puppy".

Sunday, February 3, 2008

Most people are just afraid...

of offering help to strangers. I don't think it's because they don't want to...it's more that they just don't know how.

I was in my shop this weekend when I looked outside and saw a blind man in the street. Not on the sidewalk, but actually on the street walking along the bumpers of parked cars. Traffic was slowing down, carefully avoiding him but no one was stopping. As I turned and saw him and headed out the door to ask him if he needed help, a car slowed and rolled down their window. Finally! I approached, asked where he was going, and offered my arm. He was looking for the Continental Club...2 blocks from my shop but on the opposite side of the street. As we walked to the corner, we chatted about the area and I described the direction he would need to take as we waited for the light to change. Luckily the crosswalk has a beeping green light, when it's safe for pedestrians to cross. I asked if he had any sight, he said he was totally blind. He was from the UK. I told him about Zelda. I imagined her someday navigating the streets of a European country trying to find her way. I wanted to chat more but the light started to change. At that moment, there were 2 other gentlemen readying to cross - very "euro-chic" in their expensive jeans and slicked-back hair. I was trying to explain to the blind man that he needed to cross the street and then, turn right and immediately cross again when I suddenly blurted out "Here are two gentlemen that will help you across and point you in the right direction". The "Euros" looked shocked and then nodded. I said good-bye, went back into my shop and then looked out the window to see the "Euros" actually helping the blind man cross the second intersection and then direct him up the street to go and hear some afternoon music at the Continental. Sometimes you just have to ask if someone needs a hand.

And frankly, I don't know how often I would help a stranger in need before Zelda came into our lives. I am sure it wasn't as often as I could have...

Friday, January 25, 2008

Un petit hommage...

I am trying to get back on the blogging band wagon so I thought I'd start with a list.

I can't believe how fast the time is flying and how the twins are growing sooooo quickly. They have entered the 3rd year of their lives - having been born in September of 2005. Creed was discharged from the NICU at Texas Children's Hospital in early January of 2006. Zelda is about to come upon her 2 year discharge next week. All of this brings me to the very strange point of hommage...

"To all of their care-givers/nannies/babysitters that have helped us, nurtured our children and brought us to this point..." And to avoid getting too weepy, throwing in the funny coincidence that all of their first names begin with the same sound: "K".

1) Katherine - our post-partum doula. The lifesaver of a woman who arrived every evening at 10:30pm and departed every morning at 8am for the first 2 months of the twins' lives when they arrived home from the hospital. Wildly expensive but so worth it! Evan and I could actually sleep knowing that someone was watching our babies breathe.

2) Kristen - their very first nanny. Trained as a midwife, she knew infant CPR, massage and made their first organic baby food from scratch! She stayed with us for a year.

3) Kathryn - Kristen's sister and the twins' favorite babysitter. She still sits for them on Saturday evenings and allows us our much-needed date night as often as possible.

4) Candi - our 2nd nanny. She is super competent, organized, and runs their very own private pre-school for 2 in our home. She has taught them more than I can even mention. Every day, it's something new! She has been with us since the departure of Kristen last February and will stay through the spring. We panicked when we thought she was leaving at Christmastime.

5) Candace - our Christmas nanny. A UT student, pole-vaulting track star who filled in through the holidays and ran those kids all over town - well, at least to the park and the around the fields at Auditorium Shores. We hope she'll come back this summer.

So that's it, care-givers without a "K"-sounding name need not apply...