"Paths of Glory"

"Paths of Glory"
Originally uploaded by Citizen Rob.

I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.

Money concerns force DSO to drop concert

Britten's 'Requiem' 'very expensive'

One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.

"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."

You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.

However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.

I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.

Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.

I did not receive a response. I did not require one.

-----

Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com

I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.

Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.

Robert Rummel-Hudson
Plano, TX

Monster Paw

Cover
Originally uploaded by Citizen Rob.

It's been something of a Fancy Pants Author Week, which is always a nice alternative to Tragedy Dad Week (which I haven't had many of in a long time, knock on maybe-fake Ikea wood), Sickly Diabetic Week (also not too frequent now, knock on my pancreas) or Poverty Schmuck Week (well, that's more of a chronic condition than a single week). I anticipate having a Rough Thirty-tenth Birthday Week soon, but I'm not ready to face that just yet so we will speak of it no more.

The latest on the book is this. The bad news, not entirely unexpected, is that aside from a possible Texas schedule, there is not a book tour in the works. I won't lie to you; I'm disappointed, although for entirely personal reasons. The fancy pants book tour is part of every writer's publication fantasy. It's right up there with imagining the girl who broke your heart in high school, now sitting in her trailer with her six kids, watching you share a tender moment with Oprah on her Rent-to-Own television. (I have never claimed not to have Issues.)

But the publishing world is changing, and effective marketing is happening in other places. Radio, television, and especially the Internet are far more effective media tools, and St. Martin's thinks (and I agree) that because of my years of online troublemaking and exposure, this book is uniquely placed to thrive in this shiny new media world. Book tours are expensive, and their effectiveness in promoting books or authors is questionable. Also, it's worth pointing out that since I began this whole journey over a year ago, this is actually the first time I've wanted something from St. Martin's that they've not given me. I've been treated like a pretty princess so far, and I'd be a jerk to turn all Veruca Salt on them now.

Mostly, though, I just thought it sounded like fun.

There are some other things coming down the pike, however, all of which I will share as they firm up. (One of them, a magazine feature, might just make you poop your panties. It did me, at least metaphorically.) And if you live in Texas, I might be coming to your town, by golly, since we're hoping to put together a swing through the Best of the Big Red State. The first reading/signing will take place right here in Plano. Discerning stalkers will want to come to this one, as my whole family will be there. (Trust me, it's much better than just showing up at my home with your kids so they can make friends with Schuyler. And I'm not even making that up.) I also hear that the PR person running the event at the store is extra swell.

It's funny, dealing with all the craziness that accompanies this book, because in a way, it feels like distraction, like taking the monster and dressing it up in a tuxedo. Perhaps it will sing "Puttin' on the Ritz" for us at the signing. I've always maintained that this book was something of a monkey paw, in that it represents a long-time dream for me, but on a subject matter that I would obviously have never picked in a thousand years. But as this process continues, I am making peace with it. Sometimes, I am learning, the book picks the author.

My publicist needed some current information on polymicrogyria, so I contacted the doctors who are in the know. As I look through the information they sent me, all the old feelings come rushing back, that dread of the monster that we felt the first time we were introduced. It's weird, looking at it in ugly medical terms, the same ones that scared us so badly four years ago. (Can it really have been that long?) Much of it is written in medicalese that makes little sense to me. But some of it still jumps off the page.

"Developmental language disorder can be associated with BPP (bilateral perisylvian polymicrogyria), and its severity depends on the extent of the cortical damage. Patients with marked dysarthria are often labelled as severely retarded, although they may have normal comprehension."

...

"Most patients develop multiple seizure types, and seizure control is poor in more than half the cases. Frequent seizures may aggravate speech dysfunction and result in progressive deterioration. In patients with severe and disabling seizures, especially drop attacks, callosotomy can be considered."

...

"Epilepsy was found in almost 90% of cases..."

I'm ecstatic to have this book coming out; we all are, especially Schuyler. (Ask her about it the next time you're stalking us and just watch her face.) But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes.

I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one.

Does the cat-building make it science fiction?

BBoW
Originally uploaded by Citizen Rob.

Well, it's November and NaNoWriMo time, which explains why everyone seems to be writing about writing this month. (My favorites are the people who spend time on their blogs writing about not being able to write, or even better, not having enough time to write.) While I don't really have anything to add, I thought it might be fun to share something that was sent home by Schuyler's teacher the other day. I particularly like how she's working her real world experience into her fiction.

Once there was a scarecrow. He went to New York with his best friend Schuyler. Schuyler and the scarecrow played outside in the sandbox. Schuyler built a doll. The scarecrow made a cat. Schuyler and the scarecrow eat a pizza.

Because after genetically engineering a cat, nothing hits the spot like a little pizza...

All Hallows Eve for Monsters, broken and otherwise

I had a pretty good Halloween, as evidenced by what arrived from Fed-Ex:



(I've been coveting them like the Gollum with my Precioussssss...)

As for Schuyler, she had a great time as well, like she does every Halloween.



This year, she opted for a sort of vampire-y, Goth-y chick look. The tattoos were a gift from a cool friend when we were in New York, and it would be no exaggeration to say that she loves them with something bordering on obsession. The one on her face? Still there when she went to school this morning. I suspect she's the only girl at her conservative little Plano school with art on her face today, although I also suspect that she's the envy of every little Hannah Montana-wannabe in her class.

Even though it's a sort of punky look, we agreed to this costume for the simple reason that it was a long dress, with sleeves and no bare belly. If you're the parent of a little girl, you know just how hard it is to find a costume that isn't either goofy ("Look, I'm a Care Bear!") or something from the Li'l Prostitutes Collection(TM). Half the girls we saw looked like they were part of a child molester sting operation. If looking at an eight year-old with low rise hot pants and a bare midriff doesn't make you uncomfortable, then you might want to check yourself in for treatment somewhere.

And just like that, railing against the wicked ways of Kids These Days, I became an old man. Just in time for... that birthday, too.

This year, Schuyler trick-or-treated with her best friend from her Box Class. I don't know why we never did it before. In years past, Schuyler either did the candy rounds with a little neurotypical friend of hers whom she loved unconditionally and heartbreakingly but who was frankly a toxic little bully to her, or she went by herself, accompanied only by her fussy, boring, smelly old parents.

This year, tearing from house to house with her best friend, laughing hard and communicating wordlessly, there was no imbalance between a talking child and her, no bossy kid treating her like some sort of plaything or mascot. There was only fun, and crazy amounts of sugar, and scary displays to scream at. They had the time of their lives, and not only did not of the people handing out candy have a problem with a mute little goth girl and her Supergirl friend, I'm not actually sure that anyone noticed anything different about them.

It's extremely important for Schuyler to present her difference to the world with unflinching courage and without hesitation or apology. Nevertheless, much of the time, maybe even most of the time, she moves across the face of this planet incognito, her freak flag flying but unnoticed, like a visiting extraterrestrial who walks among us.

In that sense, I sometimes wish that every day could be Halloween. For Schuyler, in a way, every day is.

Insufficient words

On seeing the Empire State Building
Originally uploaded by Citizen Rob.

As I'm writing this, Schuyler is sitting in the seat next to me on the flight from New York back to smelly old Texas. A few hours ago, we left the home of my agent who, after being charmed by Schuyler and hearing about our interesting lodgings in a part of Brooklyn apparently untouched by the hipster invasion, invited us to stay with her. It was a beautiful home at the top of a charming building in a perfect little neighborhood, and we were made to feel like family. Schuyler loved my agent and her husband, and if we've ever had a better time than we had on this trip, I can't remember when.

There are all the actual events to report on, of course. Schuyler loved the American Museum of Natural History, as we figured she would. She abducted my agent's assistant to be her personal plaything while we explored the museum. Schuyler also managed to lose her mind in FAO Schwarz for a good three hours before picking out a toy that she saw during her first five minutes in the store. The friends of mine that she met on this trip were instantly her own best friends, and while she became a little wild and overstimulated by the city now and again, she nevertheless remained cheerful and wickedly charming. I've never been prouder of her, and that's saying a lot.

Our meeting with St. Martin's Press went very well, as I figured it would. Schuyler charmed everyone at what ended up being a very well-attended meeting, including an appearance by the publisher herself, who shook Schuyler's little hand like she would any professional author's and expressed her own personal interest in and excitement for the book. Those of you who have asked about a book tour may be disappointed to learn that there are not presently plans for an actual tour, but there are other possibilities afoot that might land me in your town at some point. Besides (and this is probably shameless even for me), publishers are known to quickly put together a tour if a book has strong early sales and good word of mouth. So, you know, I'm just saying.

I also got to see an actual bound galley of my book. Which was, to be totally uncool, very cool.

Another thing that I think I can mention now (and enough people at SMP admitted to reading the blog that I assume I'll get a quick, frantic email from someone if I'm not supposed to say anything yet) is that in February or March, it looks like Schuyler's Monster will be featured in Wondertime, a fun and really well-written, hipster-y parenting magazine that I've liked for a while. (The first four issues they put out a few years ago included a series of articles about a little boy with a similar speech disorder as Schuyler's, and it was well-done enough to catch and keep my attention.) Wondertime is published by Disney, so it should be easy enough to find. I'm in league with The Mouse now. I assume they won't pick a part where I sound like a vulgar yokel. Good luck with that, Wondertime.

I had some fancy pants author moments, but mostly, I was a dad on this trip. More than that, I think Schuyler and I became better friends this week, sharing experiences that required few words. After our meeting at St. Martin's, I took her for a walk towards the Empire State Building, site of her hero's last stand against pesky bi-planes. About half a block away, I told her to close her eyes. I led her to the corner, got my camera in place, and then told her to open her eyes and look up. I thought I'd get a photo of her look of amazement. Instead, I captured a moment of pure, unbridled joy, a full-throated howl of recognition and challenge, as if she were ready to take up the battle herself. She did the same thing the first time she saw King Kong, when he leapt out of the jungle to save his girl from the dinosaurs. It is easily my favorite photo of the trip. It might be my favorite ever.

I watched Schuyler as she took in the city, observing as she attempted to make friends with other riders on the subway (with admittedly mixed results) and as she yearned to help a man passed out in the street, sadly telling me about him for the next three blocks. She told me all about what she was seeing, things that amazed her such as looking down on buildings with gardens on their roofs. During the many uninterrupted hours we shared, she asked me questions about my own father that she'd never asked before, and listened earnestly as I tried to explain what it means when someone dies. We became closer than ever, closer than I thought possible, in ways that the parents of neurotypical kids might take for granted but which felt like gifts to me.

I saw the city through Schuyler's eyes and was never bored, and if I thought this trip was going to be about what Schuyler got out of it, about what she stood to learn from the experience, I was as wrong as I've ever been in my life.

I'm trying to explain what this trip meant to me, and to Schuyler, but I'm failing miserably. And perhaps that's okay. The best parts, the ones I can't explain very well, they belong to us anyway.

New York, Old Navy

Travelers
Originally uploaded by Citizen Rob.

So is it real irony or Alanis Morissette irony that Mister Fancy Pants Author forgot to pack his pants for his meeting with St. Martin's Press?

Huh. I guess I know what our first stop is going to be, once we get out of Brooklyn...

A question and a chuckle for you

UPDATE:Okay, I closed the poll a little early since I needed to print up the results, and they were running pretty consistently. Thank you, and just to let you know how much I appreciate your help, here's an amusing and wildly unattractive photo of me.

(And before you feel inclined to say anything "helpful" about my new Ahab look, I did in fact finish shaving it off after taking this photo. And, you know, after cracking myself up. I am easily amused.)

Eagerly awaiting the revolution

Sometimes I get email from old skool readers asking why I don't write about politics anymore.

I don't know. I guess I usually just find it easier to stick my finger down my throat...

A Father's Journey with His Wordless Daughter

On the bumper with Dad
Originally uploaded by Citizen Rob.

In a week, we head off to New York City, and Schuyler is getting excited. She took us shopping for a nice outfit for our St. Martin's meeting and had me add some terms to her Big Box of Words (like "sea monster", "mermaid" and "New York City"). We even stopped by the still-frightening Libby Lu for another set of the little face jewel sticker thingies so she can dazzle the big city.

I'm a little nervous about this trip, of course. Despite the positive experience I've had all along with St. Martin's Press, I still worry about making an ass out of myself. It's a silly fear for a number of reasons, not the least of which is that they already read my book, which is full of stories that don't necessarily make me look like the nicest, smartest or most emotionally stable person in the world, and their response was "Let's publish this, by golly!" They already know the embarrassing parts.

I also worry about dropping the ball and losing Schuyler on the streets of New York. This is also sort of silly since anyone who has ever spent time with the two of us can tell you that I am a fussy and twitchy father when I am flying as solo parent with Schuyler. When Julie is there, we spilt the freaking out duties, but Julie is entering her busy season at the book store (where, by the way, she has gotten permission to hold my very first appearance, which feels exactly right) an won't be with us. It's just me and Schuyler and all my worries.

When she was a baby, I had an irrational fear of taking her on the second floor of a mall, after all. I was convinced that some lunatic was going to run up to her stroller, grab her and toss her over the railing. I also thought big dogs would run up in the park and run off with her, wiggling sadly in their big slobbery jaws. I don't expect any New York misadventure to catch me off-guard, although just typing that sent a little wave of anxiety through me, heightening the spaz factor up another notch or two.

For Schuyler, this trip is about building memories for her. I have no idea how she'll feel about this book when she's older, although from what I know of her personality so far, I suspect she'll be more interested in the possibilities of helping other people than in whatever privacy issues might arise from the book. She's excited about it now; ask her about the book, and she'll either refer to it on her BBoW as "my monster" or "schuylers monster", which is especially fun since I don't believe I've ever referred to it by name to her. She's picked that up on her own.

But no matter how she feels about it down the road (perhaps she'll write the sequel, Schuyler's Dumbass: The Stuff My Father Got Wrong), at the very least, she will one day be able to look back and remember that her father's book gave her the opportunity, however brief, to step out of her monster's shadow and walk the streets of Manhattan like she owned the place. She'll have memories of the museums and the energy of the city and seeing the site of King Kong's last stand. She'll be able to remember going into the Flatiron Building to talk to fancy pants publishing folks about HER book like the literary figure she is.

She's earned this. Well, I think we both have, really.

My voice is my power...

This was put together by a tenacious group of teenagers who are much more significantly impaired than Schuyler but who use similar speech devices.

Produced by an AAC advocacy group in the UK called 1 Voice.

These should be Schuyler's monsters

A number of you have written to me to let me know about this, which is coming to Dallas at the end of the month. I saw a commercial for it on television this morning, and it looks amazing, in a "watch Schuyler's head explode" kind of way.

Tickets are not cheap, and this is one of those things that I suspect is much more effective when you're not sitting in the nosebleed seats. I'm trying to decide if we can afford this, especially coming off a no-doubt expensive trip to New York, but I suspect I'd kick myself for the rest of my life if I didn't take Schuyler to this, with her dinosaur love.

I mean, come on. Look at that.

---

UPDATE: We're going, woo!

When I showed Schuyler the video, her eyes got huge.

"Are they scary?" I asked.

"Yeah," she answered.

"Do you want to go see them in person?"

"Yeah!"

She's a thrill junkie.

Transfiguration, at the mall

Small amazement
Originally uploaded by Citizen Rob.

Schuyler was recently invited to a birthday party by one of the girls in her Box Class, and since Julie had to work, I was flying solo. No big deal, I do it all the time. The two of us are taking Manhattan like Muppets in a few weeks, after all. Birthday parties are cake, so to speak.

It wasn't until this morning, a few hours before the actual party, that I took note of the fact that this party was to be a Club Libby Lu party.

How to explain Club Libby Lu to the uninitiated? And unless you are a parent of a little girl between the ages of maybe five to twelve, or you're actually a little girl yourself (in which case you shouldn't be reading this blog, the creepy old fat man uses dirty words sometimes!), you are almost certainly uninitiated.

"Club Libby Lu. A special secret club for super fabulous girls can get makeovers parties, play games, get advice, and find really cool princess paraphernalia. It's a girl thing!" That's the company line.

There are plenty of dissenting opinions, such as this sort of horrifying article called "Glamour Babes" from the Washington Post. That's a scary article, and it left me with a sinking feeling in the pit of my stomach all day.

Despite my misgivings, I took Schuyler to the party anyway, because the time she spends with other kids outside of school is precious to her, particularly when it's with other kids with disabilities. Also, I would be there scowling menacingly at anyone who tried to dress my daughter as a crackwhore.

I'm not going to dispute the issues of Club Libby Lu as a concept, and I am sure that a lot of parents have a different experience than I did. But today, when the local Club Libby Lu found itself host to five little girls with varying degrees and types of disabilities, not a one of them capable of unassisted speech, the gum-smacking Hannah Montana clones working the party did something I'm not sure I was expecting.

The long version is that they dressed Schuyler and her friends in sassy glam rock outfits and put up their hair in trendy, hairspray-shellaqued styles. They made up the girls' faces and assisted them with creating bubblegum-smelling lip gloss and let them shower each other's heads and clothes with sparkle dust. (Schuyler took particular joy in putting a generous handful in my hair, too. Every time I move my head, the world in front of my face becomes a Disney movie special effect.) They ended the afternoon with a little dance party and a group photo. The Libby Lu staff laughed with these kids and listened to them jabber excitedly along every step of the experience, and if they were put off in any way by the fact that almost none of what was being said to them was intelligible, they did not let on even for a moment.

The short version? Club Libby Lu transformed five broken little girls into absolutely normal tween pop culture princesses, if only for an afternoon. And for that, I will never speak a word against them.

Stalker tip

Schuyler in NYC, 2003
Originally uploaded by Citizen Rob.

If you find yourself wandering the streets of New York City any time between October 23rd and 27th, and you see a fat old man with a questionable beard and a cute little girl who talks like Stephen Hawkings, it just might be us, by golly.

Schuyler is excited, although I don't think she really remembers much about the city. She was only three years old the last time she was there, after all. That feels like a lifetime ago.

Aside from our date with monsters, our meetings with the fun folks at St. Martin's Press, and a visit to the Empire State Building (where, she informs me that unlike her hero, we shall ride to the top on the inside; she apparently understands that contrary to popular beliefs, it IS the planes that will get you), our plans are pretty wide open. Suggestions are always welcome.

Incidentally, hotel prices in New York City? Not funny. Not funny at all.

Breakup

The end of a relationship can be hard, but it can also feel like a fresh, cool breeze on a sweltering day. Sometimes you get to the end of a relationship and wonder how it ever went on so long in the first place. Complacency is a powerful force, but when its bonds are finally shattered, the happiness you feel makes you realize just how bad things had become.

I got out of an abusive relationship this weekend. I broke up with Bank of America.

I received a check from my publisher on Saturday and took it to the bank to deposit it. I braced myself for trouble because it was an out-of-state check, and sure enough, I was told that there would be a hold on it while the funds cleared, and those funds wouldn't be available for TEN DAYS. Apparently Bank of America doesn't cotton to that new-fangled electronic gizmo banking, but instead prefers to put my check in a leather satchel and hang it on a post outside, to be picked up by the next Pony Express rider as he heads north through Indian Country on his way to New York.

I explained how this was uncool since any royalty payments I receive for this book (shut up, it could happen) will come this way, but the bank manager shut me down, and not even fake-bank politely, either. When I said that I was considering closing my account and opening a new one somewhere else, she said that these rules were FDIC regulations and would be the same at any bank I went to, so don't bother. Furthermore, if I used this particular check to start a new account somewhere else, there would be a 90-day waiting period before those funds became available.

"There's nothing you can do, little man," she said. (paraphrased) "Submit and go home."

So I walked out to my car, drove down the street to another bank (one that had come highly recommended by another writer for just this reason), and thirty minutes later, I had a new account. The funds will be available tomorrow or Wednesday.

I'm not going to kid myself. My new bank doesn't do business in order to help the common man and make the planet a nicer place to live. But I feel like I just broke up with a girl who was narcissistic and hateful and liked to stab me in the eye with a fork. If my new girlfriend turns out to be a crack addict or a boogereater, at least it'll be a new kind of anxiety. It's nice to change things up from time to time.

Have a nice life, Bank of America.

---

UPDATE, 10/3 - As good as their word, my new bank came through with my funds, and I even got a call just now from the bank manager to let me know. The funds actually became available before I've even received a debit card in the mail. Fancy!

No-fly zone for monsters

The Plano Balloon Festival took place this weekend, and unlike last year's Elmer Fuddlike weather ("Awise storms! North winds bwow, south winds bwow..."), this year the skies were perfect. We spent the weekend chasing balloons around town and watching them land in front yards and in the middle of city streets, as well as in the little park adjacent to our apartment complex. We attended the launch on Saturday night and stuck around for the nighttime lighting of the balloons and a surprisingly cool fireworks show.

It was fun and perfect and absolutely and totally devoid of the monster. Schuyler made a friend at the festival who simply asked if she could talk. After we explained Schuyler's situation, the girl shrugged as if she well and truly did not give two shits, and the two of them ran off to play, only pausing briefly at one point to collide, bonking heads cocoanut-style and crying for maybe 30 seconds before shaking it off and taking flight again.

Only now, looking back on it, is it clear what a nice weekend it really was. I suppose like most of the best moments in life, we were enjoying it too much at the time to notice.

Not exactly "Snakes on a Plane"

Maxie
Originally uploaded by Citizen Rob.

Schuyler and I were discussing our impending trip to New York City (impending as in "as soon as I get paid my last installment of crazy book money"), listing the things we want to see while we're there. She's jazzed about seeing the Mythic Creatures exhibit at the American Museum of Natural History, of course. There's also apparently a butterfly conservatory, too, so her little head may explode by the end of that day. I told her that she's going to meet my agent and my editor and the people who are making the book, and she seems excited about that as well.

And of course, she wants to see the Empire State Building. Her Kong love never wavers.

As we lay on the ground outside our apartment last night, letting Max roll in the grass and looking up at the stars, we discussed the trip. You'd be surprised at how well we communicate, even without the Big Box of Words. I can understand most of what she says pretty clearly, and Julie can understand almost everything. We'll usually repeat what Schuyler says back to her, just to make sure we got it right, and when we do, she says "Yeah!" with an excited smile.

"Are we going to take Maxie with us?" I asked her. She'd had a scary moment earlier when Max had gotten away from her and had almost run in front of a car, so he was still very much on our minds. She looked at him as he lay on his back, chewing on grass.

"No," she finally said, and then started laughing. She was cracking up, hard, and I had no idea why.

"Why not?" I asked, as if taking a puppy to Manhattan were a perfectly reasonable plan. "What's so funny?"

She finally stopped laughing long enough to say that we couldn't take him because he would pee and poop on the plane. She continued busting up about the idea for the rest of the evening, and she brought it up again this morning.

Two important things to note about Schuyler's observation:

1) She's absolutely right, actually.

2) She thinks poop is funny. This is also absolutely true, if only to us.

Different

At play with the wolf cub
Originally uploaded by Citizen Rob.

We were watching a pair of documentaries on television about the world's tallest man and woman yesterday, which Schuyler and I both found fascinating. It sparked a surprising dialogue.

I've always had a morbid fascination with people who suffer from gigantism, ever since my own freakish growth spurt in fifth grade, which sent me from being a normal, even slightly smallish kid to a 5'11", size 11 shoe-wearing monster who towered over most of my classmates by the next year. I had no way of knowing that I was only two inches away from my eventual adult height. I thought it was the beginning of the end for me. In my mind, I was going to be one of the tall, lonely people detailed in the Guinness Book of Records, shambling around sadly with a cane and a crowd of onlookers, waiting for my giant heart to fail. I'm not kidding, it was a very real fear for me.

I don't think Schuyler has any such fear. She is getting tall, but not unusually so, and probably only to my eyes since she was a tiny little infant, what, like two weeks ago? I understand the inevitability of Time and its steady march, but with a bad birthday coming up, I feel a little like that march is happening right over my face. And Time might just be wearing rollerblades.

The documentaries we watched discussed the inevitability of unwanted public attention for their subjects, and for some reason, this really caught Schuyler's attention. Schuyler is luckier than a great many broken children in that she doesn't get a lot of stares. Her condition isn't one that attracts stares or comments, not immediately. It sneaks up on people who see her as a normal, even precocious kid right up until the moment that the Big Box of Words comes out of its bag, or she starts talking loudly and excitedly about something.

But she's aware of her difference, and last night, she wanted to talk about it.

She pointed to the woman on TV as she stood in a crowd of gawkers, and she signed to me that the woman was sad. I was a little surprised by this observation, since it wasn't an obvious thing to notice; the woman was smiling for the photos, after all. I suppose Schuyler has seen her share of sad smiles.

"Why are all those people looking at her?" I asked.

Schuyler put her hand on top of her head and then thrust it up in the air as if she were being measured.

"She's different, isn't she?" I said. "Who else do you know who's different?"

She indicated herself, pointing to her throat. She then went on to name her classmates one at a time, signing the things that made them different. We'd had a discussion earlier in the day about treating people who are different with respect, after she had pointed to a waiter and signed that he had a red nose. The topic was apparently still on her mind.

"Everyone's got something different about them, don't they?"

She gave this some thought and then pointed to me and indicated that I was also very tall. (Well, when you're four feet tall, isn't everyone?) She reached out, rubbed her hand on my beard and laughed. Well, it does look different, and not necessarily in a flattering way. I didn't need a seven year-old to tell me that.

Interestingly, when asked what was different about her mother, Schuyler couldn't think of anything. Julie wears her freak on the inside.

Angelic

Monument in Lights, 2/02
Originally uploaded by Citizen Rob.

I was channel surfing this morning and came across MSNBC's replay of the NBC live coverage from the morning of September 11, 2001. I came in after both towers had been hit and watched until the second had collapsed and reports were starting to come in about a plane crash in Pennsylvania, and was there a connection?, etc.

In my own 9/11 remembrance routine, the only thing I actually plan every year is a listening of On the Transmigration of Souls, the New York Philharmonic's 9/11 commission by John Adams. I usually skip the memorial ceremonies broadcast on television. I find it weird to visit the WTC site in person now, with its weird combination of new construction looking to a Bright Shining Future and all the reminders of the Day the Music Died Past, neither of which feel right to me. Watching it on TV is even worse.

But while I wouldn't exactly say that I enjoy watching the replay of the actual coverage, I do find it to be more affecting and real to me. It serves as a reminder of how it really felt on that day, the "what the fuck?" feeling that washed over us all. It's easy to remember the fear we felt as we watched the individual moments of horror unfold on the screen, but we forget until we go back and watch it again how unprepared we were to process those moments as they unfolded in real time.

This morning I watched as the first tower crumbled while Katie Couric kept on talking about something or other, only to be interrupted a few seconds later by someone pointing out that it appeared something was happening, perhaps a section of one of the buildings falling off. It was at least five minutes before someone actually said out loud that the tower had actually collapsed. It reminded me how even when our eyes told us what we were seeing, our brains were still trying to find some context.

Now, six years later, we have an expanded context. The new president who climbed on top of the rubble pile and issued a warning to the terrorists as the whole world stood behind him has been replaced by a lame duck reviled by the international community and even some members of his own party. The war we've been fighting and losing has replaced our capacity for horror and citizen outrage with a numb weariness. If there were another terrorist attack on this country today, I suspect the reaction, both from our citizens and the rest of the world, would be very different. Less shock, more "okay, here we go..."

Six years. I think this year is the first one in which it doesn't feel like it just happened. So much has changed in my own personal life as well. In 2001, we lived in Connecticut and were only beginning to suspect that Schuyler's lack of speech might be something more than just a delay. The day we faced a big monster in Manhattan, Schuyler's smaller monster still lay waiting to be discovered. She was not even two at the time, stumbling into toddlerhood even as the world in which she would toddle was changing as well. Now she's a little girl of almost eight, all legs and motion, and the world that changed is starting to feel a little old and dusty again, as if it had always been this way.

Everyone's memories of September 11 are colored by their own lives and experiences, so it's probably no surprise that to me, 9/11 is infused with thoughts of Schuyler, like two different colors of paint that have been swirled but not mixed. Less than a year before the towers fell, we had taken Schuyler there, and I have clear memories of her gazing wide-eyed up at the towers as she put her tiny hands against the cold surface of their sides, and of the very first time I ever heard her braying, unashamed laugh, the one that I hear almost every day now. I also remember with sober clarity our trip to the site a week after the attack, and how Schuyler's smile made a weary police officer cry.

"Look at that smile," she'd said as she bent down to meet Schuyler. "You are just like sunshine to me right now!"

When I sent my book off to my editor at St. Martin's Press, I braced myself for one chapter in particular to be cut, the one called "The Saddest Place in the World". It was one of the few parts of the book that was drawn largely from what I had written online at the time, mainly because when I went back and reread it, it said exactly what I wanted to say about September 11th. I was ready to fight for my Chapter Five, because while it didn't have much to do with Schuyler's monster, it had everything to do with the lives we were living. I wouldn't know how to tell her story without talking about what it was like, living in America and particularly right up the road in New Haven, in the shadow of those Great and Awful Days. When Schuyler was diagnosed two years later, her monster was born into a world already made monstrous.

My editor left it mostly untouched. Of all the things she has done for me and this book, that might be the one for which I am the most grateful, or at least that's how I feel this morning.

The chapter concludes with almost the same words as an entry from those days:

"America when will you be angelic?" wrote Allen Ginsberg. I think about the people who died all those years ago, those faces on desperate, hand-lettered posters and ethereal voices crackling over cell phones. I think about all those souls, all those young lovers and sad lonely people, the greedy and the generous, the pragmatists and dreamers and gentle mothers and rowdy fathers. They were just like me, and probably like you, too. They weren't angelic. None of us is.

Even as I write that, however, I know it's not true. I do know an angel. I watched her bless doomed towers with tiny hands and grant absolution to police officers whose hearts were breaking. Schuyler's an angel and also a bit of a devil, a fragile flower who speaks in a howl. She remains, now as she was then, the reason I give a damn.

My Beloved Cyborg and Me

Our first artistic collaboration
Originally uploaded by Citizen Rob.

When Schuyler gets handed school projects that are beyond the scope of her monster, we roll up our sleeves and get creative. This weekend, she has to make a giant poster for her turn as the Second Grade Star Student of the Week, although it's unclear if she's actually the start student or if this is just getting the poster ready early. Apparently every kid gets a turn, which is probably as it should be in second grade. Let every little monkey get a taste of celebrity and power.

Schuyler functions pretty well in a mainstream setting, and she'll continue to improve as she goes alone. But like many of her projects, the big poster presented some challenges. Schuyler's handwriting is still very hard to read, for example, and she doesn't deal well with small spaces in which to write. We've been having her write out as much of her homework as possible, as opposed to printing it off the Big Box of Words like we did last year, but for her poster, we decided to use the computer and help her create something with a little zazz.

I know some people probably would disagree with helping her out with a project like this, as if we were ashamed of her monster-fogged work. I guess we felt that Schuyler's poster should reflect the girl behind the monster, rather than seeing all her interests and loves obscured by the Difference. Her artwork is good stuff, and her ideas of what she wanted to present were very cool and, yes, very Schuyler. (She drew King Kong, of course.) But since her writing is a problem and doesn't really keep up with the crazy race going on inside her head, we decided to do a few items for the poster as a family, and in doing so, bring some computer power into play.

Which was how Schuyler and I came to create a real artistic collaboration, a little comic book-style page telling about her new puppy, Max. She wrote the text and helped choose the photos, and I did the formatting for her, using basic Apple "drag this here and type this here and suddenly everyone thinks you know what you're doing" software.

(I was already thinking of comic book formatting because I'd been tidying up my old site, reformatting my old "pet blog" parody site, Flappo!, the night before. I know Flappo! was crude, and since the pet pages trend mercifully died out pretty soon after, the joke of vile, rude pets instead of cute, fluffy ones is sort of dated. Still, I have to admit, of all the pre-diagnosis things I ever did, Flappo! was maybe my favorite. It was my first attempt at humor after September 11th, although I'm not sure anyone else thought it was actually funny. Still, I sort of miss the guy who was writing that sort of thing, back before I became all Twenty-four Hour Tragedy Dad.)

When our Max page was done, we all just sort of looked at it and said, "Wow, maybe it looks TOO good." We didn't want it to appear that Schuyler just sat around playing with her dinosaurs while mom and dad obsessed over having the Absolutely Most Perfect Poster of all the Plano Kids, by golly. She served as both writer and director, after all.

But for Schuyler, with so much of her future waiting for her in the world of computers that will help her speak and create, even more so than most kids, perhaps it was fitting that she once again was able to compensate for her monster by electronic means. If Schuyler's going to have to engage in these compensatory measures to get through school, I think it's only fair that she be able to do so with style.

Schuyler's future looks great, so long as there's electricity. If civilization collapses and we all revert back to primitive life, however, I suspect she'll still be the kid holding the conch shell.

"How do you like me now?" - College Edition

The book release it still five months away, but I got my first press since the Publishers Weekly announcement a year ago. It felt sort of fitting that it should be in my college newspaper, if for no other reason than it'll give all my old professors a chance to marvel at the fact that I have a life with a family and a career and a book deal, and that I'm not working as the night manager at Taco Bell or editing the inmate newsletter in federal prison somewhere.

And just like Time's Person of the Year, the star of the story (or at least the headline), dear reader, is YOU:

Blogs, financial support help break girl's silence

(In the actual, kill-some-trees-mwuh-ha-ha printed version, the title is "Breaking Her Silence", which I like much better. Too bad they actually misspelled her name in the headline and again in the floating box on the continuation page. Welcome to our world.)

I thought the reporter, Courtney Sevener, did a good job. When she interviewed me, she didn't start off asking what the book was about or who the hell am I or whatever. She did her homework and hit the ground running with a good basic understanding of Schuyler's condition and how we got to where we are now. I hope the media I talk to in the future show as much professionalism as a sophomore college reporter did this week.

My only complaint about the article is that I don't appreciate the photographer apparently using Photoshop to give me a giant Robba the Hutt belly and boobs. That's just not right.