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.

Someone probably touched his nuts

Do you remember in the scary and tumultuous days following September 11, 2001, when news sites like CNN.com were so busy that the servers were overloaded? The amount of information being presented was constant, it seemed, and rapidly changing. It felt as if the world we'd known before would never return.

This morning, less than a week before the sixth anniversary of the attack, CNN.com is linking to a story from an Orlando affiliate about a new, vicious attack on innocent, God-fearing Americans.

Squirrel Attacks At Day Care

I think it is important to read between the lines here, incidentally. When a child is bitten nine times by a tiny rodent, that is a child that is grabbing said rodent.

Anyway, my favorite line, the one that made me feel like despite it all, we're all going to be okay in this grand rough world, is the last one:

"None of the injuries seem to be life-threatening, officials said."

Thank God. When squirrels kill Americans, the terrorists win.

-----

BREAKING NEWS: In the time it took to post this entry, they've updated the story. It is now a story about a three-year-old HOSPITALIZED because of the squirrel attack. Not so amusing now, I suppose. Apparently he was on a swing when the attack came, from a squirrel so nasty and cruel and unrelenting that it even took on a Florida Highway Patrol trooper.

So my apologies if it seems that I am not giving this scary squirrel attack the gravitas that it deserves.

Although I wouldn't be me if I didn't point out the NEW, equally delightful last line:

"The squirrel in the playground attack managed to escape."

So, you know, be vigilant, citizens.

Hard to even think about

Schuyler at the airport
Originally uploaded by Citizen Rob.

I'm not going to set this up with a lot of commentary. I will simply say that you should go read this post, maybe the most affecting and poignant blog post I've ever read. It was written by Danielle, a med student whose stuff I've been reading for a while.

I read this last night, and then I sat up thinking about it for a long, long time. I think when you're the parent of a broken child, it's very easy to believe that you'll always be around for them, as if your special work grants you some sort of invulnerability to the shitty, horrible things that can happen in the world. I honestly can't tell you what would happen to Schuyler if something happened to Julie and or, who would take care of her and assume the life's work of fighting her monster with her.

It's a hard conversation for us, because there aren't any easy answers, no family in towns with schools even remotely prepared for someone like Schuyler. The thought of Schuyler suddenly left on her own in this world opens a dark pit in the very center of my body. I think it's something we need to figure out, though, and soon. It's easy to forget just how fast things can happen, or how cruel the world can be.

Father Land

On many of the writer sites I visit, I have been informed that not much goes on in publishing during the month of August. I can believe it.

As I believe I have pissed and whined about before, I don't do well when there's down time. I get frustrated because February feels a million years away, even though it will doubtless pounce on me before I know it, and I want to get all the publicity work done now now now. I do pause every now and then to remember just how fortunate I am to have these fancy pants authorly things to worry about and how many writers out there just said "Fucker..." into their cheap box wine when they read that.

I've been working on the new book to take my mind off everything else, and because apparently I do better when there's a little pressure on me (don't even ask how much of SCHUYLER'S MONSTER I still had left to write when I got the book deal), I made a little web site to serve as a little "git 'er done!" reminder to me and a no doubt breathlessly waiting world.

So go check out the teeny tiny little page for FATHER LAND. I wrote more about this project back on Father's Day, so if you've got ideas, or if you have an interesting father story of your own, by all means, drop me a line. I'd like to have enough material for a proposal by the end of October.

Oh, I'm sorry. Were you hoping for something interesting tonight? Yeah, sorry. I would have liked that, too. C'est la vie. Or "Tough titties", if you're not into the whole Frenchie thing.

Homework

Homework
Originally uploaded by Citizen Rob.

Schuyler started school this week. Second grade, believe it or not, which is the appropriate grade level for a neurotypical kid her age. Last week, we visited her school and saw all her teachers and classmates in her Box Class. (Schuyler strutted into the room like a Roman general parading in triumph down the Via Appia.) I also met her new mainstream teacher and saw her little desk in her regular second grade class, the one where she spends a good chunk of every day. Neurotypical kids greeted her excitedly, and if you blinked, you might miss her monster altogether.

We sat down and did her homework just now, and once again I was struck by how far she's come. She learns quickly, although it's still hard to know how much she can and can't read. (Imagine for a moment how you might determine reading ability and comprehension with a non-verbal kid, and you'll quickly see the gulf we deal with every day.) It's clear, however, that she is reading at some level, and learning more every day.

Here's an example of how it works. The sheet we're working on tonight asks some basic questions about likes and experiences and such. I read the question to Schuyler.

"I would like to visit _____."

She answers on the Big Box of Words.

"Jungle."

"I would like to visit this place because _____"

"I want to see animals."

She then writes the answer in the blank, referring to the BBoW screen for spelling if she needs to. Her handwriting is unclear (it probably always will be, as her polymicrogyria seriously hampers her fine motor skills), but it's getting much better. Since she has a new teacher, I transcribe her answers in small letters underneath her writing.

It's pretty basic stuff, no different than any other second grader's homework anywhere. But for us, it's a gift. Not from God, because fuck that guy. It's a gift from Schuyler, and the Big Box of Words, and all the people (including many of you) who have worked so hard to get her to this point.

But mostly Schuyler.

Pragmatic monsters

Schuyler works the clay
Originally uploaded by Citizen Rob.

I received an email the other day, a very polite and warm email, to be honest, and like many others, it took issue with my use of the word "broken" in reference to Schuyler. There were a few new twists to the objections this time, which made me sit down and actually think about my take on this issue.

It's a divisive issue, and one I obviously feel strongly about. It's been the cause of many arguments and has damaged at least one friendship, I suspect beyond repair. I've been asked "How can I suggest that Schuyler is broken?" and told that it is appalling that I could believe anything other than she is okay just the way she is.

How do I explain that I find it even more appalling that a parent would blindly accept The Way Things Are without taking up that fight? Those are hard conversations to have. They are doubly hard when the person making the argument does so with courtesy and respect.

The person who wrote to me did just that, and the point she made was something of a new one. I do sincerely appreciate the fact that her email made me stop and formulate in words exactly how I feel about this. I won't quote her whole email, but I'm going to take the liberty of just a bit of it. I think this point is important because it touches on a thought that I've even had myself from time to time.

"My mind keeps asking the questions, 'What if these children aren't 'broken'? What if they are made exactly the way they should be? What if they were made that way to be a benefit to people like you and Julie?' You guys HAVE found your own path, and like you say, some days are good and some are bad, but it seems that the overwhelming consensus of both of you is that your lives are better because Schuyler is in it. So, what if God designed her to be the way she is to benefit you?"

That's an inviting thought, actually. I even suggested something similar to an old friend of mine recently along those lines. I said for many who believe in reincarnation, there are those of us who live the lives we live in order to learn things that we need to learn in our ultimate journey, but (they believe) there are also those who are placed here to teach those lessons to us. It's tempting to think of Schuyler that way, almost like a kind of angel sent to guide the rest of us down some path.

Ultimately, however, I have to reject that idea. Whatever effect Schuyler may have on those of us in her life, the fact remains that she exists in her own right and deserves to live the same life and have the same chances to make it in this rough, mean world as any unbroken child. I've often written about Schuyler's ethereal, almost otherworldly manner, but her reality is decidedly unromantic. If God placed Schuyler on this earth to suffer (and make no mistake about it, trying to communicate wordlessly in a world of the speaking is suffering, no matter how brave a face she puts on it) just so the rest of us could benefit, then what intrinsic value does her life really have? Does anyone deserve to exist simply as a tool, even if it is as a tool of God or Fate or Whatever?

"Schuyler isn't 'broken'. She's just different, and different isn't always a bad thing. Actually, in her case, 'different' means SO MUCH more!"

I understand what this person is trying to say, and I know that a lot of you might agree with her. But Schuyler's reality is not so pollyanna.

Schuyler has an indomitable spirit, and I believe she affects change on some level in everyone who meets her. But she's not just different. Sometimes I hate that word, too, the way it tries to simply place her in another category. Holland instead of sunny Italy, marching to a different drummer, whatever. I feel like the message that "different" sends to her is ten times worse than "broken". I think it tells her that her disability isn't responsible for her struggle and her developmental deficiency, but rather her inability to "think outside the box" or whatever. In my mind, "different" minimizes the very real challenge that she faces (even now, without the added delight of the probable seizures that still loom very large in her future). "Different" suggests that her developmental delay, which is still quite significant, is somehow her fault, as if she simply isn't trying hard enough.

It's easy for people looking in on Schuyler to romanticize her condition, and I know I do a fair amount of it myself. (Calling it her "monster", however, is obviously a writing device, a metaphoric representation of a thing that has no discernible form and which does not have a mind or an intent of its own. Just in case you were wondering if I really do think there's a nasty little green monster living inside her head...) But the reality of Schuyler's polymicrogyria is decidedly unromantic. It's a hard truth that she deals with every day, and one that Julie and I fight along with her, with no tender illusions. Schuyler has no use for gentle words to describe her monster, and she's got no time for them, either. You might disagree with me on this, but I think we would be doing her a disservice if we were to sugarcoat her situation or deny the indisputable obstacles that she faces and which she alone can surmount.

I appreciate the writer and all those who have come before her, as well as those who will continue to speak up. I appreciate their love for Schuyler and for my family, and for the positive way they want, they NEED, to see my daughter. But Schuyler lives in a world harder than the one most of us live in, harder and less certain.

Schuyler is not an instrument of God or a guiding angel for all the lost souls around her, not even my most lost of all those souls. She is a broken little girl who works her ass off every day of her life to fix what is broken and work out her own way through a very unromantic and unforgiving world. When, and not if, she makes it, when she carves out a unique and wonderful and, yes, different place for her life, it will happen because of her hard work and her ability to face the monster, unblinkingly, unafraid and with unsentimental clarity.

So that's how I feel about that.

A sad commentary on the state of the internet? Perhaps!

So this is really flattering.

As is this, once I looked up what it actually meant.

But this? That's just sad.

Anyway, thanks to whoever put me up for those. I'll try to keep my hotness in check. It hasn't been a problem for the last 39 years...

Art Monster

I've been wanting to show this to everybody for a long time, like a little kid with a barely-contained secret, ever since I got the preliminary sketches. A few months ago, I commissioned Debbie Ridpath Ohi to do an illustration (as part of her Little Nightmares series) for the book site. I received the finished piece today.

(Go check it out in context. I redesigned the book site, and I'm a lot happier with this new look, which seems warmer and more appropriate to the book and its subject. Also check out the new endorsement I received from Neal "Alternadad" Pollack, over on the Press page. Okay, pimpage over...)

I had a pretty specific idea of what I wanted, but what Debbie came up with far exceeded my expectations. Even all the way back in her initial rough sketch, she had Schuyler down perfectly. In her final version, she managed to capture exactly the tone that I hope comes across in the book itself. The illustration has humor and pathos; it's a little dark but full of Schuyler's tough girl spirit.

The monster seems to me to appear both friendly and just a touch menacing, an ever-present companion who nevertheless has a healthy respect for the monster slayer in pink Chucks.

And Schuyler? She looks entirely unconcerned and ever so slightly amused, ready to play with the monster or kick its ass, depending on the need. Either way, she's content with the outcome.

Thank you, Debbie.

So much for that.

DONE.
Originally uploaded by Citizen Rob.

I would like to officially record the following:

At exactly 1:27am on August 17, 2007, exactly one day shy of a year since I got the book deal for SCHUYLER'S MONSTER, with a farting pug at my feet and Shostakovich's Cello Sonata playing on iTunes, I finished the final edit and read-through of the manuscript. Aside from any typos that I didn't catch, this should be the version of the book that you'll see in the bookstore. If you're in the book and I thought of you as a big ass tonight, then by golly, you're a big ass in the book.

For those of you who are curious about the process, this last edit was startlingly Old Skool. None of it was done electronically, aside from me keeping my own personal file synchronized with the changes I was making with one of Schuyler's little red Crayola pencils. The copyeditor and the lawyer both made their marks on my original manuscript, and it was on those slightly dogeared sheets that they wanted my own edits. I have no idea if that means someone will then transfer all these edits to an electronic copy or if some poor slob has to retype the whole thing. I'm not going to think about that too much; I already feel guilty enough about all the trees I'm going to kill for this book.

(Just kidding about the trees. Fuck 'em.)

So. Now I have seven more days alone to amuse myself, and no actual work to do. That never ends well, you know.

Pilgrim

Pilgrim
Originally uploaded by Citizen Rob.

Schuyler loves the new. She loves to travel and meet new people and "wow..." at the world in an awed whisper. Any of you who have met her can attest to how no one is a stranger to Schuyler, not for long. Her total lack of guile and shyness and hesitation is maddening for her worried parents, but it's one of the things that makes Schuyler uniquely Schuyler.

She and Julie left for Michigan this morning. Julie was nervous and flustered as she always is whenever she travels, and I was mopey and twitchy as I always am whenever they go away without me, into a world that I have always been convinced wants to devour my child.

But Schuyler saw this trip the same way she sees the whole world, as her next adventure. I have no idea where she gets that, but I wish it were from me.

Lilly Grace

It looks like someone had a better Monday than most of us. I know Omar has indicated that he doesn't intend to write a lot about life as a new father, but I hope he doesn't make good on that intention.

Congratulations, Omar and Rebecca. Welcome to the good part.

Last Dance, Last Chance

Look what I got in the mail.
Originally uploaded by Citizen Rob.

I have a secret for you. I have been reading the same book over and over for the past four months. Sometime in the next day or two, I will finish reading it one last time, and then I will be done with it for a while. Which is good, because I am really getting sick of this one book.

Which is really only problematic since I wrote it.

I got my last batch of edits back, from a mysterious entity known only as "The Copyeditor." It is that person's unenviable job to find all the little things that I have done to mangle the English language, some of which were careless mistakes but most of which were simply little tics of mine. "That" and "which" apparently baffle me like a dog hearing a high pitched sound, for example, and I misuse "like" with the frequency of a teenage girl. I also do not envy the person who had to find every instant where I ended a sentence "like this". That period is supposed to be inside the quote, and I cannot tell you why I do it otherwise. I got it right a few sentences back, when I mentioned "The Copyeditor," so perhaps there's hope for me. (Look! I did it right again! That's how I roll now, baby.)

Shortly before putting down my manuscript and hopefully going straight to the nearest Manhattan bar for boozy relief, however, "The Copyeditor" penned an extremely cool note on the back of one page. I'm going to put it on my little brag wall, which is not so much an actual brag wall (since no one ever actually comes to my apartment and sees it) as it is a place above my desk to look and remind myself that this is all really happening.

This whole process is going much better than I ever had any right to expect. This may not be the book I ever wanted to write, it might be the Monkey Paw book for me. Nevertheless, I'm heartened by the early reactions of the professional, fancy pants people who have actually read it. I'm cautiously hopeful that once the book comes out, I may be able to do the one thing I never thought I would ever get to do in this lifetime (and perhaps wasn't all that interested in doing before Schuyler came into my life).

I might just be able to make a difference in this world.

I know, that's so cheesy that it might just squirt out of a can, but absolutely true.

Programming Note: Julie and Schuyler are going back to Michigan for a week starting next Thursday. (After careful consideration, I opted for a few sessions of Recreational Sharp Things In My Eye instead.) Will I choose to spend that time working on my new book or sitting around watching cable tv and eating until I become Robba the Hutt all over again? Place your bets now.