May 15, 2006

Living in the light


Pleased with herself
Originally uploaded by Citizen Rob.
One of the most positive and yet disquieting things about writing what I write online is hearing from other parents of kids with CBPS or one of its related polymicrogyria (PMG) disorders. It's disquieting for the same reason that it's postive, wonderful even. There just aren't very many of us. Really not at all.

Think about it. When Schuyler was diagnosed with her monster in the Summer of 2003, there were supposedly no more than about forty documented cases worldwide. Forty. There have been more U.S. presidents than there were diagnosed Congenital Bilateral Perisylvian Syndrome sufferers in 2003. A city bus could have carried them all, and these were cases scattered around the world. About the same time Schuyler was diagnosed, the first CBPS case in Asia had just been identified. THE FIRST IN ASIA. Asia's got a lot of people, I hear.

As more doctors became aware of PMG and learned how to identify it with a brain scan, the numbers increased. By the time Schuyler had her appointment at the University of Chicago in 2005, that number had grown to about three hundred, roughly the size of a college marching band. (I imagine Schuyler standing in the tuba section.) I'd guess that in the year and a half since then, the number has probably topped a thousand.

Out of a world population of 6.5 billion people.

Without the internet, I suspect we could go our whole lives without ever meeting another person outside of the University of Chicago who had even heard of Schuyler's monster, let alone anyone who had it or who had a family member with it. With the internet, and with all the writing I've done about Schuyler, I meet parents all the time. I have even heard from a young lady who had a mild form of it.

It's a tricky dance. Recently, a few people have been asking to know more about Schuyler's use of her Big Box of Words. At first I was surprised by this, because I felt like I'd been writing about it a lot. Maybe I just feel that way because I've been covering it in the book, but perhaps not so much here. I'll sit down in the next day or two and write something at length about it, because it really is pretty interesting and she's doing very very well on it.

But a few messages that I either received in email or didn't make public said that not only were people interested, but they had the right to DEMAND to know more because they had given money to help buy the device. I have to be honest, it was a little creepy. In their eyes, donating to Schuyler's device fund meant that they were somehow buying the right to dictate how much of Schuyler's privacy I violate here.

And I do violate her privacy, a lot. It's something I think about fairly frequently, and I've had reservations all along. But in the end, it's my choice, and Julie's, and one day it will be hers. If I get published, she'll be known at least in some small way as "The Mute Girl Who Was In A Book", which will have a lot more impact on her than anything on the web, but still. She may one day ask for all of this to come down, and if she does, then you'll come here and find a blank page, simple as that.

I hope it doesn't happen, though, because I think Schuyler's life has been enriched by the people who have come to know her through these pages. It's like she has the world's largest extended family, and without the embarrassing drunks you deal with at the holidays. Well, you know. Not since I had to stop drinking.

More than that, though, I think the biggest loss to the world if Schuyler ever decides to go offline would be to the people who come to the internet with a new CBPS diagnosis in their hand. They come looking for something scientific, something that will give them hope, and the world of Schuyler's monster is still small enough that most of them find her pretty quickly instead.

They go out looking for hope, but I'm here to tell you, there's not much of it out there. Scary stories about seizures and choking and retardation, and death. That's what we found in the summer of 2003. But now, they can also find a little girl with purple hair and a King Kong fixation who talks with a robot voice and lives her life turned up to eleven. They can see that the future may have just gotten different from the one they imagined, but it didn't lose its possibilities.

And while I'd love to take credit for that, the truth is that I just hold her up to the light. Schuyler is the one who inspires.

I recently heard from a mother who had just gotten a PMG diagnosis for her little four year-old daughter and who discovered Schuyler when she went looking for info. We exchanged a few emails, and she sent me a photograph of her daughter. One thing that I found fascinating about the pretty little girl in the photo was that just like Schuyler, there was nothing that indicated that this child was broken. I suspect that she lives in a world much like Schuyler's, where others sense that she's different but don't know why, and are enchanted rather than repelled.

But the really interesting thing about the photo is how much she actually looks like Schuyler. Dark features where Schuyler's are fair, but with the same big, slightly sleepy eyes, the same little rosebud lips and the same cheeks. I'm not sure if it's just a coincidence, or if somehow this is the gentle stamp that Schuyler's monster leaves on her and her new-found doppelgänger.

Fortunately for them, it's not a telltale physical trait that cruelly brands a face or a gait the way that so many broken children wear their own monsters, but an ethereal beauty that draws you into their strange, wordless world, whether you want to or not.

So yeah. I hope she decides to live in the light for a while.

26 comments:

Anonymous said...

For those that "demand" anything of you - (compliments of another blog - www.DadGoneMad.com - I've learned several new exclamation words from him) -
Assclowns!!!!

You inspire many of us, we all have our own monsters that take many different forms.

Anonymous said...

I love reading about your daughter, but as you've stated, it's your choice to reveal what you want to reveal about her and no one has the right to demand anything from you. If donations were made with strings attached, that's THEIR problem, not yours. I agree that those people should be referred to as assclowns.

Anonymous said...

beautiful.

Anonymous said...

I was personally baffled by the person who asked about "why don't we hear about the Big Box of Words", because -- well, once a child learns how to talk and has been talking for a while, do you still hear excited gushing from the parents? You know -- "Wow, she learned how to say 'cat' last year, and hey, she still knows how to say it!"

Not that it's not a big deal, and not that more growing won't happen. It just strikes me that, like with any child, once Schuyler started learning how to use the box, for me it just became....the way she talks. Hearing what she has to say is what matters to me, not the means by which she says it.

Anonymous said...

Rob, I appreciate being allowed to see a little of your and Schuyler's story. For what it's worth, I don't think my contributions or interest give me any rights whatsoever, especially not the right to violate your privacy or demand anything.

While I'm happy you're willing to share some of your lives with all of us and I love your writing and I don't want you to stop or censor yourself, I still hafta say this:

From this one post, I can't tell whether you're aware that your journal and blog will probably always be publicly available in some format. Between the Wayback Machine (at http://www.archive.org/web/web.php) and the various search engines and other web archives, there's pretty much nothing you can do to prevent it. So even if Schuyler asked you to take everything down, it wouldn't be gone, just harder to find. Since her name and CBPS are both uncommon, your stuff wouldn't even be that hard to find...Googling would bring up other sites that link to yours and that would provide URLs to enter into the Wayback.

Just had to say it in case you didn't already know this.

--SaraK

Anonymous said...

Someday that mother will give her daughter the book you wrote and tell her that she spoke with you about her and that you said you hoped she decided to live in the light for awhile.
Do you know how that will make her feel?
You are just the best Rob.
This is why Schyler has you and Julie as parents.
Donna

Anonymous said...

Human nature is not always the most attractive commodity.

For many of us who blog about our children there is the feeling that we are violating their privacy. I am always aware of that and try my best to avoid saying anything my son would be embarrassed by. And yes, were he to read my blog and object, it would be down within ten minutes.

Your first allegiance has to be to your child, not your readers, and there's no compromising that.

Schuyler is a fascinating child in part because she does have that ethereal beauty that draws people in. It's something that makes her both more attractive and more vulnerable. It's your job to stand between her and anyone whose fascination with her becomes unwholesome. Trust your gut!

Robert Hudson said...

Yeah, I realize that. She's just going to have to live with that. If there's a book in her local Barnes & Noble with her name and face on the cover, I suspect that'll be more of an issue, for better or worse.

Anonymous said...

"right to know" or "demand to be told"? Sheesh. That almost makes me as furious as the folks who "demand" not to be offended or say they have a "right" not to be offended by something. There's good taste and bad taste, yeah. Varies depending on the person. Lots of stuff offends me. So what. But nowhere in the Constitution does it say people have a right NOT to be offended. Nowhere in the "Beloved Monster Constitution" does it say ANYONE has a "right" to know anything. Off the planet!

Nightfall said...

Whether online or off, Schuyler will always carry her own light with her. I'm glad that through you, it can shine on us a while.

Damn you for making me cry again. ;-) I mean, bless you.

Anonymous said...

Nonsense. A web author can have their site blocked from the Wayback Machine, and one can even tell Google to take a hike, if that's one's desire.

Wayback Machine FAQs (See "How can I remove my site's pages from the Wayback Machine?": http://www.archive.org/about/faqs.php

Google Webmaster FAQs (See "How can I remove content from Google's index?")
http://www.google.com/support/webmasters/bin/answer.py?answer=35301

Granted, it'd be a PITA, but it's entirely possible to remove content from the major archives (ergo, the sites most likely to be able to keep your musings around for decades to come).

So, your stalkers had better start printing out pages now, if they're worried about your writings being moved offline someday in the far future. :)

Carly said...

We found out that something was wrong with my son when I was 16 weeks pregnant. At first my doctor thought it was just club feet, but then they thought he was also paralyzed. Two months went by until they finally came up with a diagnosis: Arthrogryposis. They told me that he was most likely not going to make it and they pushed me to terminate. And they said that if he DID make it, his arms and legs would be very deformed and basically useless. We decided to keep our baby boy and he was born with rather crooked legs, but very little involvement in his arms. He went to a children's hospital in the next town from us at five days old. They started him with serial casting to straighten his legs. He also has dislocated hips so they did ultrasounds on them and went ahead and did the same on his head to look at his brain. It looked normal under ultrasound but they ran an MRI too, just to try to find a cause. They found out that he had CBPS.

Well, my whole point in this post (which is very long, sorry!) is that when you mentioned that most people who are looking for info and wind up finding Schuyler instead, you were absolutely right... As soon as my son was diagnosed, I started to look for info on the internet because the doctors couldn't tell me too much. Your website was the VERY first thing I clicked on. That was over a year ago. And I have YET to find an ACTUAL person with a face other that "17 year old female" in a research journal.

I just started reading regularly and I'm glad to see that Schuyler seems very happy. She's a very beautiful little girl. We think that intellectually, Bram will probably be a lot like Schuyler. He's not babbling like he should be but he doesn't seem behind (intellectually) otherwise. And his physical therapists expects him to be walking by the time he's two.

You and Julie seem to be doing a GREAT job with Schuyler. I wish all of you the best.

Anonymous said...

In response to Kim:

I feel the same curiosity surrounding the BBoW that others have. For me, it stems from not knowing much about how the device works or is operated. For example, how are connections made between different words? What's the interface like? How can she string different words together to make longer phrases?

Because I'm neurotypical (as I would imagine most of the other readers here are as well), it's very hard for me to imagine trying to communicate to others using a method that mediates you so much - it's just natural to let the words form and spill out coherently, you know? There is no doubt that Schuyler is smart, but since she uses her box to talk to the world she needs more time to express herself than others, no? I think that for myself and others, that's the question.

Snarkasaurus said...

A good friend of mine learned a painful lesson about privacy not too long ago....her nine year old daughter went to a sleepover at a friend's house and as some kind of bored-let's-play-on-the-Internet game, they went Googling each girl's name and their parents' names. Under her mom's name came up a blog she had been keeping for a while. The daughter was bored and went to sleep, but the friends stayed up reading it. Although there were no "terrible secrets" in this blog, the things in it were heartfelt and personal (as yours are) and the kids printed stuff out and showed it around school. Kami is a resiliant kid and wasn't bothered by the blog itself, but was more bothered than my friend expected by the kids she knew knowing some of her family's personal business-- her mom's conflicted feelings about her relationship with her own mother, Kami's potty training problems, etc. I think the mom knew it would be stumbled upon eventually but didn't realize it would happen so soon or that the kids would be so nosy about it.

Anonymous said...

She's wonderful, Rob. Thank you for sharing her with us. Keep dancing, Schuyler!

Pegkitty said...

On the BBoW usage issue, what I wonder is how difficult it is to lug it everywhere, and how the decision is made of where to take it somewhere. For example, did you take it to the baseball game? Do you take it to feed the ducks? Does it have, like, a special backpack for Schuyler to carry it with, or how does that work? Like Christina said, I'm neurotypical, as are pretty much everyone I know (IQ not being taken into account)so I wonder about things like the logistics, I guess.

grandefille said...

Maybe I'm weird, but I always figured our little contribution to the BBOW was simply an investment in the future -- all our futures, actually, because of the wonderful things Schuyler's going to do for the world as she grows. Just look at what she's already doing for the world, via your writing, by helping educate others about living with CBPS. And the fact that you and Julie are kind enough to let us into your world from time to time is just an added bonus.

I look at those selfish morons who "demand" things from a stranger on the Internet as the same ones who steal handicapped parking places and then flip you off when you say something to them. They'll get their comeuppance eventually, either on this side or the other.

Of course, I'm the type that hopes that comeuppance comes on this side and involves embarrassing videotape and indictments. But that's just mean ol' me.

Baby Fishmouth sends kisses. And Teddy Grahams.

grandefille said...

P.S. -- I love that photo. Hee hee hee.

Anonymous said...

If Schuyler does, some day, read the things that you wrote about her, what she will come away with is an incredible awareness of how much she was loved by her parents. How her entrance in the world was a joyous occasion, how each new milestone was proudly displayed (I remember the Gratuitous Baby Picture of the Week, or whatever it was called), how the one theme of Rob's entire post-baby writing is how he and Julie want the world for their daughter, delivered to their doorstep. Don't we all want that for our children?

There is nothing embarrassing in here, no pictures of Rob turning the hose on a naked Schuyler and threatening to show her first boyfriend (thanks, Mom). It's not like he's writing "Charlotte, Light and Dark."

As a parent, I have struggled daily with the inability to show or tell my children how much I love them. I know they understand through hugs and kisses and listening to their stories and telling them mine. I feel the need to do something more. As an adult, Schuyler will have something precious, that few of my generation have: a play-by-play of her life and how it changed the lives of those around her.

GAH I am typing too much, but when I donated to the BBOW fund it was an extension of my love for my kids, and the hope that Rob and Julie can hear the funky little sentences that kids put together. I'm not sure why anyone would consider themselves "stockholders" but go figure.

Anonymous said...

I hope so too. Schyler is an inspiration for us all. She looks so grown up in the new photo!

watchwhathappens said...

beautiful, rob. i have a real low tolerance for gushy parent writings, but i'd read your schuyler entries all day long. i've never seen such spirit and light come though via internet as i have with her via you. she is extraordinary, and so are you.

CameraDawktor said...

Oh man, do you know you have such a gift?!

I could just feel my tears when you spoke of people who DEMAND to know more about Schuyler's device just because they gave you a little money.

I just don't get people like that....

And this.....
"And while I'd love to take credit for that, the truth is that I just hold her up to the light. Schuyler is the one who inspires."

Man, if you don't put that in your book then you should!

I wish I could see the picture of that little girl, but I'm sure you don't have permission and obviously I'm not one of those that EXPECT you to do/not do ANYTHING!

You are helping a lot of people, and I think Schuyler understands your heart more than most children understand their parents'.

I'd be surprised if she'd be offended.

Anonymous said...

I can see where it would be creepy - because you wish you could hand those particular dollars back and say, "I'm sorry, you obviously misunderstood - no part of my daughter, in any way or form, is for sale - now or ever." But if it weren't Schuyler, it would be something else; in your own and others' journals, there are always readers who feel they are "owed" something somehow, just because they read. Bizarre.

Kath McC.

Anonymous said...

That's unbelievable. I think it's natural to be curious about it - in the sense of "I care about this family so I'd love to know more BECAUSE I CARE". But donating money to a good cause does not give anyone the right to demand anything.

I've donated money to the Red Cross to help after Honduras was devastated years ago. I didn't later call them up to ask for contact info of the families I had helped because it was somehow my right to know exactly what was going on in their lives.

Anonymous said...

"there are always readers who feel they are "owed" something somehow, just because they read."

Heh -- now I'm suddenly reminded of some of the things I've read about some of the antics of the rabid HARRY POTTER fans. It's gotten to the point that even J.K. Rowling has publically said, effectively, "yo, they're nuts."

Anonymous said...

If you think about it, the people who demand anything from you are the family members who are the "embarrassing drunks you deal with at the holidays". Let's just refer to them as our Uncle Billy Carters!