Mind the Gap...

Each Holiday season, I tend to enjoy the TV commercials that advertise the Gap. I know, it's trite - but they're usually upbeat with good music and fun dancing, nevermind that the clothes are of no interest to me. This year, there is one in particular that just makes me happy and sad at the same time.

Have you seen this commercial? There is a group of adorable little girls - probably ages 4-7 - they are all dress in whacky bright colors, stripes and patterns, scarves, sweaters and leg warmers. They dance and smile and seem to be genuinely happy with each other. At the end, they sit and form this human caterpillar and all scoot out of the frame...

I want Zelda to be that happy. I want her to dance with glee with her friends. And hold their hands and communicate with them. To acknowledge their existence and relate to their companionship. Right now, she does well at school but still plays by herself. She'll smile and chat but she seems to be alone most of the time. She has to be taught how to play, what friends mean and do and how they relate...

Yesterday, I dressed la petite Z in a flowered skirt, pink tights, striped socks with little ankle boots and a pink and tangerine sweater. She was at least as cute as those girls on TV and I hope just as happy...

Ze plan, ze plan...

we have had an educational plan for Zelda this year and it has thus far, worked really well...As you know, both Creed and Zelda started at Ecole, their French immersion Montessori school last year. We love the school and they love our kids but this past September we decided to add a bit to Zelda's academics by putting her in PPCD (Public Preschool for Children with Disabilities) each morning for 3 hours. We drop Z off at Gullet Elementary and proceed directly with Creed to Ecole. Three hours later, la petite Z hops on her very own bus that takes her over to join Creed and her other amis at Ecole. So far, it has worked out swimmingly. Zelda receives the extra speech therapy and structural learning as she was at times experiencing frustrations with too many unseen choices in the academic part of the Montessori day. The PPCD program has 2 teachers for 6 students and she has a lot of directed activities as opposed to free time. When, she gets to Ecole, she has socialization, lunch, reading, nap and then hangs out with the other kids for extended day. She still has the French immersion and is doing quite well with it.

Now here's the problem...this 3 hr PPCD program is only for this year at Gullet. So, the hunt has begun for her next level PPCD program which unfortunately will go until 2pm and unfortunately at another school...then over to Ecole. The twins won't start kindergarten until fall 2011 as their birthday misses the cutoff in September. I am thus far feeling exhausted by the prospects of always trying to find the appropriate school for Zelda but at the same time knowing that once she's there, she will be a superstar. The other part of "Ze plan" is getting Creed into the same school and on the same bus when the time comes. For now, he's a happy camper at Ecole - understanding everything that's said to him in French but not really speaking it. La petite Z, on the other hand, out of the blue will say things like..."Il fait chaud" and "J'ai faim."

Ca continue...

Playground question...

Is it okay to kick some 3 yr old's ass?

Every day, we receive a report of Zelda's activities in her PPCD classroom - this is the public school program that she attends for speech and structural learning before she continues on to Ecole each day to join Creed. She's there from 7h4am - 10h45am and then a bus takes her to Ecole.
The report says things like: "Super listening today!" "Nice verbalization!"
And then yesterday: "A three yr old boy from the class next door pushed Z down on the playground, stole her glasses and hid them. We talked to her about it and she seemed ok."

This morning I told her that if it happens again to say "Hey!" and to hold her head up the way she does, smile and say "I'm gorgeous!"

I think it's time...

Le Fabuleux Destin de Zelda Nicolette...

...cue the circus calliope-like music:

La petite Zelda is 3 1/2, adorable, feisty and fearless. She awakes each morning, sometimes in our bed and sometimes in her own. No matter, as she is always happily sporting a tangled mess of blond hair, closed eyes and a huge grin. She's always silly and chatty in the mornings - eager for Cheerios and a specific choice of music. She spends each day at Ecole, has 5 therapies a week: speech, pre-Braille and O & M. She can count in French up to 20, likes to take walks, and loves her music.

As of now, we don't know what Zelda can see...since she was born, the question has remained unanswered. She has had at least 8 eye surgeries (I've lost count) - all in California. She has had a lensectomy, a few vitrectomys and several retinal reattachments. Sometimes the drs say she may have light perception in her "good" eye, the right one which is smaller. They say there is most likely no sight in her left. She rarely opens her eyes but she does understand what to do when I ask her to do so. When she does open them, they are a piercing blue and each goes in a different direction off to the sides. I guess I figure that if she was seeing anything she would want to keep her eyes open all of the time. Luckily, Zelda has excellent "mapping" and traveling skills. She obviously knows our little bungalow inside and out but then there's the neighborhood: "I want to go outside", she says. And from there, she'll take her long white cane, head onto the porch, down the concrete steps (no helping please!) and off into the direction she has chosen. Down the driveway, down the hill to my shop, up the sidewalk, over to the gate and down the steps, off to Jo's for coffee...she'll tell you. She uses sound, echolocation, feels for curbs with her cane, often bends over to touch the terrain with her hands.

Yes, la petite Z is amazing and a joy but this is not to say that life is always peachy here on Nellie Street. Zelda can be pissy and determined and an absolute tyrant at times. She has learned to scream, throw things, refuse to speak or apologize, and manipulate others. If Creed leaves the tricycle in her path and she trips on it, she becomes the angriest 3 year old you'll ever encounter. There's no pacifying her. She's pissed. She has a way of charming you and driving you crazy at the same time. She'll repeat the word "Mommy" incessantly until I want to pull my non-hair out of my stubbly head. Somedays she'll only want to eat O's and drink tea...other days, she'll throw her lunch tray and get sent home from Ecole. Yet, she's silly and giggly and smart as a whip.

Zelda's new games include opening the refrigerator door and standing there with it ajar while she takes one bottle out at a time and places it on the kitchen counter. With each bottle she'll ask Daddy, "What's that?" "Maple Syrup" "What's that?" "Ketchup" "What's that?" "Soy sauce." Then, one at a time, she'll carefully return each bottle to the approproprite shelf, while naming the product. And repeat. Our energy bills are soaring. now it's time for me to start labeling the groceries in Braille. She also likes to go into the pantry and look for specific items: O's, cookies, Pirate Booty, veggie chips, etc. - note to self: also need to Braille those items. Zelda is way into loading her CD player with her music of choice - need to Braille those, too - and she tortures us while experimenting with the volume control.

People that meet her say that she's magical, others like her lips, or marvel at her agility. Mostly they're curious. It's funny though, as a parent, you want your kids to feel loved, feel happy and feel special - but not too special. Some of us just want them to know that they're just like any other little kid...

Now it's time to go and start brailling everything in the house...

The great debate...and Chemo #1

So, I've waffled back and forth and thought about starting another blog to discuss my cancer treatment but then I've reconsidered. I'm still the mom of the toxotwins, I am still parenting, I still have cancer - or at least am going through the weeks of chemo to make sure it's held at bay - not unlike the toxoplasmosis parasite that floats in my body as well as in the bodies of Creed & Zelda. So to separate the cancer from "Our life with the toxotwins" would seem as though I was trying to keep the two bubbles apart...they are intrinsically intertwined. I will pledge however, to try and not dwell too much on either one but to talk about them together as much as possible.

It's tough right now to have the energy to run with 3 1/2 yr old toddlers. They continue to astound me. Creed is soooo curious. He IS Curious George, the little monkey. He has officially entered the 50th percentile on the height and weight charts leaving behind his micro-preemie status of his 2 lb birth. He has opinions, asks questions and says "I need a hug". He responds regularly in French and seems to love going to Ecole.

As for Zelda, she is still ma petite puce...weighing in at just over 25lbs. She'll surely be a member of the "Stringbean Club" like her mom & dad. Z speaks more and more each day. Yesterday she counted to 20 in French while bouncing on the "big bed"! I attended another ARD meeting for her educational plan. She'll begin receiving speech therapy services in a few weeks to help with her articulation. I think it's harder, as seeing people, to imagine how a blind toddler learns to speak. She can imitate flawlessly but when she hurries and wants to pour out her words, they become garbled. She doesn't see the way our mouths move and can only do auditory imitation. I can almost see the wheels turning in her active little brain. Andrea, her TVI, will also up her visitation at Ecole to 3x/week. Two hours a week they work on concepts and pre-braille exercises. The 3rd session will focus on socialization and play. Zelda needs help learning to interact with the other kids. They all seem willing but need some guidance.

And I survived my first round of chemo. A saline drip, followed by anti-nausea meds, cytoxin and then the Red Devil - Adriamycin...I'm doing okay. No puking, just occasional dizziness, a mild headache and fatigue. This first round has so far been flawless as I wait for the other shoe to drop. I had my shot of Neulasta yesterday, to keep the white blood cell count from dropping too low - which is also of concern with that pesky toxo parasite - side effects from the shot 24/48 hrs later can include intense bone pain and flu like symptoms.

So that's it! Flowers arrived on my chemo day, friends have brought by dinners and each evening, someone arrives to help us deal with the twins at bedtime. Merci, merci mille fois...

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.

So sometimes one has to write about the not-so-fun stuff...

so Zelda had a seizure last week. It's the first one she's had since January - but even then the neurologist was only calling them "spells." You see, it all started last summer (2006) when she was just a babe. They say that kids born with toxoplasmosis can have seizures and Zelda started to have some unusual 'episodes'. Basically it goes like this: she gets quiet, she gets pale, her lips start to turn dark purple, she is unresponsive and her hands are limp. I would pick her up, rub her back and in a minute or so she would stir and then fall into a deep sleep for an hour or so. Last fall we called EMS several times and she was hospitalized for days on end, hooked up to an EEG to chart her brain waves. And still, no evidence of seizure activity. They would just send her home. Finally right after the New Year 2007 and yet another 'episode' and trip to the hospital, we pretty much demanded she be put on some kind of medication. So, since then, she has been on Keppra. She has done so well...until the other day.

It's no fun to get that call from your nanny while you're getting ready to go home from work. Luckily, my shop is 100 yds away from home so I ran when Candi called. We called EMS and Zelda's neurologist and all concur that it was a breakthrough 'episode' related to a high fever. She had been snotty and sick all week. But now we watch and worry and wait. Will it happen it again? Probably. It sucks.

But Creed was a champ. He watched, he was quiet and when Zelda finally fell asleep on Evan's chest, Creed climbed onto the day bed and laid his head on her back and stroked her hair.

Zelda Nicolette, 1 day old