Migraines, a hematoma, rain, kids - all in the Marais...

I feel as though I'll ramble so here goes. But first: we are in Paris, we are in Paris, we are in Paris...I feel like Dorothy in the Wizard of Oz. Yes, la vie est belle but this week anywhere would have tried the last nerves of anyone. I am beginning to realize that Creed gets migraines. I really don't believe that it has anything to do with his VP shunts or shunt malfunction or even his vision. Ever since he could express pain in a fairly directed way, he has been able to tell me about his headaches. They don't come often but when they do, he wakes up writhing and crying in pain...no loud noise - not even cartoons for distraction. He wants darkness and then there's the vomiting. It happened after the night of July 4th: too little sleep, too many bonbons, rain & sun, Coca cola...who knows but I am trying to track it all. And then suddenly he'll vomit one last time - after about 3 hours - he'll declare that he's better. Was it yesterday that I slipped coming in from our lovely terrasse as I pulled in the laundry when it started to rain? Yes and as I cursed in two languages, my shin bled and developed a huge swollen hematoma that put me in bed with ice for the afternoon. The twins are angels and devils in disguise. They do wonderfully for several hours and then sink into whining, demanding, complaining little turds. I couldn't leave the appart for arnica or painkillers because that would have meant readying the kids and going down 5 flights. Creed is doing well with his French but I still don't trust an almost 7 yr old to go down into the streets of Paris to the pharmacie - even if we can see it from the terrasse. The rain comes and goes in buckets. The weather today was in the 60's. The kids at the park were a friendly lot and latched on to the twins, despite Zelda being quite disagreeable. After the initial meeting of a blind child and their reaction of "Oh, la pauvre!" (oh, the poor thing), I had them close their eyes and they each tried walking with her long white cane. They asked lots of questions and when I asked them if they lived in the "quartier", they said "Oui, le Marais." Yes, they live in the Marais...is that cool I asked them? "Ah oui", they shrugged, "0n a l'habitude." - "We're used to it"... So, we are in Paris, we are in Paris, we are in Paris...I think I am getting sick, freezing under the blankets, looking out over the rooftops...

Yoko, hello...

...yes, it was me...the crazy woman that had to thank Yoko Ono for her support of the Braille Institute free books for blind kids. When I heard that she would be here for SXSW, I only barely imagined just running into her with Zelda and introducing the two of them. But SXSW had come and gone, and there I was on a quiet Monday in my shop, chatting with Jerry, my neighbor. And then I saw her - crossing the street, coming towards the sidewalk in front of my atelier. She was so petite, in black and white, with her face obscured by a fedora & sunglasses - but I knew it was her. She didn't stop but kept walking on with her 2 assistants.

In a split second, non-thinking moment, I went after her, leaving my shop unattended. I caught up to them and passed them, and when her assistant spoke, I turned around as if to be surprised. "Oh, my...Yoko Ono." As I spoke - who knows exactly what I said except for "my 5 1/2 yr old daughter is blind and thank you so much for supporting Braille literacy" among other things. I saw her shoulders drop and relax as she listened and realized that I wasn't such a crazy stalker - only a mildly crazy one...she offered her hand to grasp mine, smiled and said to send Zelda her best wishes.

And then I moved on - but to where? I kept on walking to Jo's, met my friend Aaron at the front of the line and said - still reeling from my Yoko encounter - "I have no money with me, can you buy me a tea?, and here comes Yoko Ono." And then as we waited, there was a tap on my shoulder, and all of Jo's was staring, as Yoko wanted to talk to me again! She wanted to thank me this time, for stopping and explaining my situation and talking about la petite Zelda. She told me it "made her feel so much better." So, I wasn't such the crazy stalker, but the grateful mom that so appreciates every few months when we receive that Braille catalogue in the mail for a choice of free books, and on the front of the catalogue reads: with grateful support from Yoko Ono Lennon...

Watching a movie: one blind, one can see...

...so, we've taken to watching movies in our little house. I, for one, love crime TV, but Evan is always freaking out that Creed will see violence, blood and death and I guess he's right. So, on weekends, in the mornings, we watch cartoons on PBS and then usually a movie on a dreary cold day like today.

Creed is like his Dad: if there is absolutely anything moving on the screen, he is fixated. Frozen. Un-interruptible. (Is that a word?) "Creed, Creed, Creed!" I can shout. "Evan, Evan, Evan!"...it's the same non-responsiveness.

Zelda watches TV with her ears. She walks from her room, leaves her Lego's or books or beads - or brings them along with her - then stands right next to the screen and listens. It all depends on if she hears something sufficiently interesting or recognizable. She can sing with the Biscuit Brothers or recognize Elmo's voice and then will repeat or count along. She'll echo the dialogue and ask questions. "Mom, who's that?"

So, today we decided to watch the animated "Beauty & the Beast" (not to be confused with Jean Cocteau's "La Belle et la Bete", one of my favorite films). Both twins were on the "big bed", with Creed hunkered down to pay attention and Zelda sitting nearby with her "tickets". She likes to play with a stack of unopened mail - sorting it, holding it, counting it, etc. The movie begins and instantly Creed gives a dissertation on how Gaston is the good guy and the Beast is bad. So bad, that he wants to close his eyes and not see him. It's scary. Meanwhile, Zelda is happily singing and listening to the voices and songs. When they enter the castle, she shouts "They're in the bathroom" - because she recalls the echo of when we go into a public restroom. When the wolves are barking or the Beast is growling, she'll say "Mom, it's the dogs!" I try and describe the difference to her but the action moves fast and so does Zelda...she is bouncing, smiling, rolling on the bed, but always listening. I try and relay the plot, the characters and the action but to no avail. She's just not there yet...in terms of patience and wanting to understand. Nothing is scary to her and she can leave the action at any moment. In that way, Zelda is like me. I rarely get frightened and actually like horror films and I can also multi-task, knitting, emptying the dishwasher, sewing a dress, while a movie is on.

But the three of us do make it through the film: "tickets" and cookies all over the bed. Creed leaning on his elbows, riveted to the screen. He appreciates when the Beast turns from a "bad guy" to a "good guy". Zelda likes that Belle is pretty and that there were some songs. But alas, at the end, she still says, "Mom, can I NOW go and listen to Manu Chao?..."

Zelda "watching" a movie...

Ce n'est pas normal...

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

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

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

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

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

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

A blind man walked into a restaurant...

back to Chicago for one last time...as we finished our Toxo Family meal at the restaurant near Millennium park, I observed a trio of customers being led to their table. All 3 were chic and well-appointed and obviously European. The woman was well-made up and sported a beautiful head scarf, one gentleman was silver haired and well-dressed and the other was muscular, wearing conspicuously nice attire and carrying a long white cane. He was blind.

As we left our table, I whispered to my friend, Gemma, mother of Fin, "I'm going to introduce Zelda to that blind gentleman." I approached the table carrying Zelda and with aplomb said, "Excuse me for interrupting your meal but we just wanted to say Hello." They were extremely gracious. I placed my hand on the shoulder of the blind man and said, "I see that you walk with a long white cane." He proceeded to unfold his retractable cane and replied with a smile, "Oh, is it white?" The ice was broken. I introduced Zelda and told him that she was 3 1/2, learning French and Braille, and walked with a long white cane as well. He took her hand and kissed it. She leaned into his shoulder and patted him to get aquainted. The woman told us he had a PhD. His other friend chimed in, "And, he's a triathlete." We chatted just for a moment and I thanked them for their kindness and inspiration. Zelda said, "Au revoir."

There are little bits of magic out there and that was a moment that I will always cherish...

An Independence Day challenge...

Can you free yourself for just a moment today from your dependence on experiencing this very visual holiday through site? That is: close your eyes tonight while you're watching the fireworks. Try and experience the sound, the smell, imagine the dark sky, have a friend or family member describe the colors or shapes of the exploding lights way above you. Or sit at a cook-out with friends and close your eyes: listen to the multi-layers of conversation, the clanging of tools on the grill, the smell of cooking vegetables or meat or even your own crunching of a bite of chips in your mouth. Can you find that bowl of salsa or pour your drink without overflowing the glass? What music is playing? Is someone having a one-sided conversation on a cell phone? Did you hear that car door slam?

Welcome to Zelda's world...try it...study it...don't be afraid to enjoy it...
Happy Independence Day...

Et ensuite, la petite Z...

Aside from her major meltdown and being sent home from Ecole yesterday at noon (yes, really...apparently she threw her lunch 3 times), "Zelda is blossoming". Those were the words of Madame H. Ever since her latest seizure, she's been chatty, interested, social, silly and overall, happy. Now mind you, Zelda can be an opinionated, willful little pissant. But overall, she's a delight. The therapies seem to be working and Ecole is more than willing to receive her team of specialists into their environment, even when the Braille teacher doesn't speak French. She's even learning to count with an abacus!

Zelda's latest adventure is going to Speech Therapy. Each Monday, Evan drives to Ecole, drops off Creed and then continues on to a nearby elementary school where Zelda meets with Miss Sally and other toddlers for a half hour of speech. At 9am, ma petite puce leaves the classroom with her long white cane, boards the bus, gets strapped into her carseat with the help of a traveling aide and then they drive her back to Ecole. She is the envy of all the students in preschool. Zelda gets to ride a bus by herself! Zelda gets to go to another school! It's all so mysterious - they run up to her and hug her and welcome her...which leads us to another therapy: socialization. Andrea is her TVI - as I've mentioned before. She goes to Ecole 2x/week to work on pre-Braille with Z. On a 3rd afternoon, Andrea works with Zelda and the other kids after school on "How to play with Z". Zelda obviously doesn't have the visual imitation skills of seeing children. Her imaginative play is almost non-existent at this point. Her play tends to be functional: sorting, building, working...As for the other children, they tend to see her as an adorable little doll. They want to do everything for her, sit her on their laps, lead her by the hand. She tolerates it for a bit but is far too independent for that. On play dates, she stays by herself with music or leggos or a puzzle. She is just starting to interact with other kids but only on an as-needed basis. She'll say hello, give a hug or a "bisou: and say their name. She's much better with adults who can direct her play and are patient. The other kids run, move quickly and lose interest. So, Andrea is working on all of this with them. The other day, Andrea had a tea party with the children. She had the other kids close their eyes and pass around the tea cups. They are learning to identify themselves to Z and put things directly into her hands when sharing. Whew...it goes on and on...it will get more difficult as she gets older. Children will become more judgmental and more exclusive as opposed to inclusive. I just hope we can prepare both of our kids with the necessary tools to withstand the socialization process. I just hope we can prepare ourselves.

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.

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.

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 ???

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.

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...

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...

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...

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.

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.

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...

Don't tell me how sorry you are...

that my daughter was born blind. Tell me that you're amazed at how well she is doing and how silly she is when she giggles. Tell me what a good mimic she is when she 'burps' on command. Tell me how smart she is when I say "Zelda, let's count in French" and she says "Un, deux, trois". Tell me how proud you are of her fearlessness and determination and independence. Tell me that she is a good dancer. Tell me that you can see she is a wonderfully, loving child when she gives you a hug and a 'bisou'. Tell me that you are thrilled that she is doing so well. But don't tell me you're sorry. You had nothing to do with it. And I don't need your sympathy 'cuz Zelda is a 2 year old superstar.

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.