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...

...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.

Swept away...

Children learn visually. They say that over 90% of what kids learn in the early years is by imitation. Toddlers want to use a fork to copy Daddy. They want to feed their dolls because they see other grown-ups feeding babies. They want to sit on the potty to be like their classmates at preschool. Except for blind kids...they don't have the powers of visual imitation. Zelda doesn't like to use a fork as it's easier to eat pasta with her fingers - makes sense, doesn't it? She doesn't play with her babies instead she listens to music. She's starting to use the potty because we talk about it a lot and I have her sit on my lap as I use the toilet...

BUT, Zelda is really into asking "What are you doing?" The other day, I was sweeping the floor. "I want to sweep," she said. So, I handed her the broom. As she explored every aspect of the broom, from the long handle all the way down to the plastic rim covering the bristles, I described every detail and she repeated the words. She then squatted and dropped the broom on the floor, turned it upside down and sideways, put it near her face, and stood back up. She grasped the broom in her two tiny hands and I helped her position them, one above the other to control the handle. I stood over her like I was teaching her to swing a golf club and we practiced sweeping. We would say "sweeep" in a sing-song voice and she would giggle with delight.

Next came the dirt, we knelt on the floor and felt crumbs and abandoned spaghetti - I told her how we wanted to make a pile of these things and we could "sweep" them together. This was the hard part as I wondered how would she know without feeling on her hands and knees where the dirt would be on her dorm room floor in college? Anyway, we swept the dirt into a pile and knelt down again to feel it - always with the broom at her side. In the pile of dirt was a piece of old popcorn - she put it towards her mouth: "No!", I said and explained that it had fallen onto the dirty floor...

I brought out the dustpan, Zelda banged it, dropped it, felt every edge and nook and cranny, every ridge and indentation of the metal tool. We squatted and felt the dirt, put the dust pan into position, kept one little foot on the dustpan and proceeded to sweep the dust into it. Well, we kind of succeeded - at least she was thrilled! She walked with the dustpan in her hands over to dump the dirt into the poubelle...a half hour later and with focused concentration, Zelda grasped the concept of sweeping.

Later on, Creed went down to my shop and he saw Brittnie cleaning the counters with glass and towels. "I want to do that," he said. Within 30 seconds, he had picked up the 2 appropriate tools and cleaned every surface in the store....

Sigh...

P.S. My cancer treatment update: surgery for port removal on Friday, meeting with radiation oncologist on Monday...being swept away...

2 notes...

Note No. 1:

On Wednesdays at Ecole, an art teacher comes in to do paintings with the kids. Creed brought home a Winslow Homer rendition. In the meantime, Zelda worked with her pre-Braille teacher and this came home in her lunchbox. I'm verklempt!

Note No. 2:
From my dear, funny & erudite friend, Laurent, in Paris (with an attempt at a fuzzy brain translation de ma part):

"En gros il y a trois résultats esthétiques possibles au crâne rasé chez la femme:
(Overall, there are 3 aesthetic outcomes possible for the woman with a shaved head):

-La version Britney Spears, genre j'aurai pas dû laisser mon p'tit frère jouer au coiffeur avec moi, pour rattraper le coup j'ai pas pu faire autrement que de tout raser et je ressemble à une poupée pas finie.
(The version Britney Speers, the type that I shouldn't have let my little brother play hairdresser and now to 're-coupe' I could only shave it all off and look like an unfinished doll.)

-La version Sinead O'Connor, style nonne bouddhiste, oui je sais j'ai l'air très ennuyeuse et ascétique, et c'est peut-être pas tout à fait faux.
(The version Sinead O'Connor, style buddhist nun, yes, I know I seem bored and severe, and perhaps it's not entirely untrue.)

-Enfin la version Grace Jones (ou Gail Chovan), c'est-à-dire j'ai une "gueule" et quand on me regarde on a l'impression que j'ai une nouvelle coupe et pas que je n'ai plus de cheveux."
(And finally the version Grace Jone - or Gail Chovan - that's to say, I have a "look" and when one sees me, they'll have the impression that I have a new "doo" and not necessarily that I no longer have any hair.)

Keep 'em coming...

P.S. Today I'm dealing with pukiness, insomnia (up night from 1am-4h30am), headache, losing taste buds, an acute sense of smell and intense dry mouth, dry eyes and dry skin...trying to get some sleep. I know that it all could be a lot worse, but this sucks...

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.

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...

I wanna be blind, too.

Sometimes I just wanna be blind, too.
I wanna be blind...

- to not see the way people stare at Zelda with their eyes full of pity instead of joy and admiration.

- to ignore the doubts and fears that I have for her future.

- to wake up in the morning and experience the start of a new day in the way that she does.

- to be able to have no preconceived notions or judgements of people based on their appearance.

I am sure that there are more reasons.