Schuyler's Monster
Originally uploaded by Elizalou
How cool is THAT? (Thanks to my good friend Eliza...)
February 17, 2008
February 16, 2008
Monster Days
Today the book insanity begins in earnest, or at least the part that takes place in the real world rather than the one that looks out at my from my screen here. Until now, most of the excitement of this whole book experience has taken place online. It has all felt almost virtual, like becoming emperor in Civilization. Ruling the world is nice, but defeating the Visigoths doesn't mean you don't have to stop to heat up some Chef Boyardee for your kid.
Today it all steps into the real world. A reporter from a public radio show called Weekend America is going to spend the morning with Schuyler and myself. (Julie will be at work, which is fine with her; as always, she prefers to be the silent partner.) I feel sort of bad about how the day is starting off; thunderstorms are rolling through and are probably going to wreck the better part of the day. I hope our crapy little apartment makes for compelling radio.
The next couple of weeks are going to be hectic, in the best possible way. Tuesday is the big release day, of course, although the book is already making its way to some stores (and is even being delivered to the UK by Amazon, apparently). I'll be getting up bright and early that day to fly to New York City, for the Mediabistro Book Release Party on Wednesday. Then I fly back to Dallas on Thursday.
Friday will begin with a bang. I'll be in the tv studio at our local PBS station, recording a segment for Think, a show that I actually like a great deal. Then, later that day, I'll be recording a podcast interview for Jumping Monkeys (and how often do you get to say that?), before ending the day with a reading and signing at Julie's store. The next day, I'll have another signing at another Barnes & Noble in Dallas.
Next week will include another tv appearance, on a local CBS show called Positively TEXAS!, and a return to the public radio station for a taped interview for KUT Radio in Austin. March will start off with more book signings in Arlington, Houston, Austin and San Antonio. And at some time in all this, People Magazine will be reviewing the book, hopefully without employing words like "crap" or "suck" in the process.
It's exciting and terrifying, all of it. And yet, in the midst of it all, real life goes on. With everything that is happening, the thing I find myself wanting to tell you about is how Schuyler had a week in which she was out of school on Monday and without her device for an evening (hers had to be sent back after the screen failed, and the loaner didn't arrive until the next day), and yet she still managed to come back on Friday and do really well on her spelling test. I'm a little embarrassed to say that she exceeded my own expectations, which is what she does on a regular basis to just about everyone, really. We believe in Schuyler because we know how tenacious she is, but we also fear her monster, in ways that she never does. Schuyler never fails us, and yet our fear for her still persists, and shakes our faith, to our shame.
And that, my friends, is what my life is like. It's one in which there's a book, and a little girl, and an invisible monster that still colors every aspect of our lives, both good and bad. All this book business is exciting and surreal and wonderful. I don't take a bit of it for granted, not for a moment, and I'm incredibly grateful for every moment of it. But there's a reality here, the same one that is omnipresent through every good day and every bad one.
It's the thing that sits silently watching through it all, the thing that made all this happen and yet the thing that I'd trade away every bit of this new success, just to be rid of it. I'd give it all up without hesitation, just to hear Schuyler say "Good morning" when she wakes up in a few hours, or to watch her talk about Hannah Montana with her friends, or to take away the lurking phantom of seizures that haunts her future.
I love that Schuyler's Monster is doing so well, but I hate that Schuyler's monster is, too.
Today it all steps into the real world. A reporter from a public radio show called Weekend America is going to spend the morning with Schuyler and myself. (Julie will be at work, which is fine with her; as always, she prefers to be the silent partner.) I feel sort of bad about how the day is starting off; thunderstorms are rolling through and are probably going to wreck the better part of the day. I hope our crapy little apartment makes for compelling radio.
The next couple of weeks are going to be hectic, in the best possible way. Tuesday is the big release day, of course, although the book is already making its way to some stores (and is even being delivered to the UK by Amazon, apparently). I'll be getting up bright and early that day to fly to New York City, for the Mediabistro Book Release Party on Wednesday. Then I fly back to Dallas on Thursday.
Friday will begin with a bang. I'll be in the tv studio at our local PBS station, recording a segment for Think, a show that I actually like a great deal. Then, later that day, I'll be recording a podcast interview for Jumping Monkeys (and how often do you get to say that?), before ending the day with a reading and signing at Julie's store. The next day, I'll have another signing at another Barnes & Noble in Dallas.
Next week will include another tv appearance, on a local CBS show called Positively TEXAS!, and a return to the public radio station for a taped interview for KUT Radio in Austin. March will start off with more book signings in Arlington, Houston, Austin and San Antonio. And at some time in all this, People Magazine will be reviewing the book, hopefully without employing words like "crap" or "suck" in the process.
It's exciting and terrifying, all of it. And yet, in the midst of it all, real life goes on. With everything that is happening, the thing I find myself wanting to tell you about is how Schuyler had a week in which she was out of school on Monday and without her device for an evening (hers had to be sent back after the screen failed, and the loaner didn't arrive until the next day), and yet she still managed to come back on Friday and do really well on her spelling test. I'm a little embarrassed to say that she exceeded my own expectations, which is what she does on a regular basis to just about everyone, really. We believe in Schuyler because we know how tenacious she is, but we also fear her monster, in ways that she never does. Schuyler never fails us, and yet our fear for her still persists, and shakes our faith, to our shame.
And that, my friends, is what my life is like. It's one in which there's a book, and a little girl, and an invisible monster that still colors every aspect of our lives, both good and bad. All this book business is exciting and surreal and wonderful. I don't take a bit of it for granted, not for a moment, and I'm incredibly grateful for every moment of it. But there's a reality here, the same one that is omnipresent through every good day and every bad one.
It's the thing that sits silently watching through it all, the thing that made all this happen and yet the thing that I'd trade away every bit of this new success, just to be rid of it. I'd give it all up without hesitation, just to hear Schuyler say "Good morning" when she wakes up in a few hours, or to watch her talk about Hannah Montana with her friends, or to take away the lurking phantom of seizures that haunts her future.
I love that Schuyler's Monster is doing so well, but I hate that Schuyler's monster is, too.
February 12, 2008
Perfect Storm
When I went to bed last night, I was aware of the possibility of thunderstorms moving through the area, but when they arrived in the middle of the night, they announced themselves like something from a 1950's monster movie. If there was any slow buildup, we slept through it, right up until the bright flash and deafening BOOM that awakened us in a chaotic frenzy of vaguely coherent obscenities.
A few seconds later, Schuyler was standing in the doorway.
The comparison to a monster movie is a good one for her, actually. One of the things that Schuyler and I share is a love for those movies and, more generally, the thrill of being scared. (Julie has been successfully vetoing my taking Schuyler to see Cloverfield for weeks now.) When we watch a scary movie, Schuyler will cower behind a blanket and make little whimpery sounds, but if I try to turn it off or change the channel, she gets well and truly pissed off. She has always been a thrill junkie.
Thunderstorms are like scary movies for Schuyler. Even at 3 o'clock in the morning, once she's found her way to our bed, she's as happy as she can be as the lightning flashes and the thunder shakes the windows. She "wow"s at the lightening and the rain hitting the window so hard that it sounds like hail, and she squeals and giggles after the thunder. As sleepy as I am at that hour and as much as I know how zombiesque we'll all be the next morning, I still can't help but stay awake and watch her little face, illuminated by the steady flicker from the storm. I don't need words from her to see how happy she is when the storms rattle our world.
Middle of the night storms are like monster movies that appear out of nowhere, and I love them unconditionally, probably for the same reasons Schuyler does.
A few seconds later, Schuyler was standing in the doorway.
The comparison to a monster movie is a good one for her, actually. One of the things that Schuyler and I share is a love for those movies and, more generally, the thrill of being scared. (Julie has been successfully vetoing my taking Schuyler to see Cloverfield for weeks now.) When we watch a scary movie, Schuyler will cower behind a blanket and make little whimpery sounds, but if I try to turn it off or change the channel, she gets well and truly pissed off. She has always been a thrill junkie.
Thunderstorms are like scary movies for Schuyler. Even at 3 o'clock in the morning, once she's found her way to our bed, she's as happy as she can be as the lightning flashes and the thunder shakes the windows. She "wow"s at the lightening and the rain hitting the window so hard that it sounds like hail, and she squeals and giggles after the thunder. As sleepy as I am at that hour and as much as I know how zombiesque we'll all be the next morning, I still can't help but stay awake and watch her little face, illuminated by the steady flicker from the storm. I don't need words from her to see how happy she is when the storms rattle our world.
Middle of the night storms are like monster movies that appear out of nowhere, and I love them unconditionally, probably for the same reasons Schuyler does.
February 11, 2008
February 10, 2008
The surreal becomes real...
By the way, remember to join the Schuyler's Monster mailing list if you want up-to-date information on book stuff.
Update, 2-11-08 - Julie just called from her Barnes & Noble to say that the book actually arrived this morning, a week early. Can I hear a woot?
February 7, 2008
We may be comin' to your town...
A lot of people have been writing to ask about upcoming appearances, so here's what I've got so far.
(More details, including links to maps, are available on my Appearances page.)
---
Book publishing party
Wed, Feb 20, 2008 -- 6:30 pm
New York, NY (RSVP required)
Fri, Feb 22, 2008 -- 7:30 pm
Barnes & Noble - Plano/Creekwalk Village
Plano, TX
Sat, Feb 23, 2008 -- 1:00 pm
Barnes & Noble - Prestonwood Center
Dallas, TX
Sat, Mar 1, 2008 -- 2:00 pm
Barnes & Noble - South Arlington
Arlington, TX
Sat, Mar 8, 2008 -- 2:00 pm
Barnes & Noble - Town & Country
Houston, TX
Sun, Mar 9, 2008 -- 2:00 pm
Barnes & Noble - Arboretum
Austin, TX
Tue, Mar 11, 2008 -- 7:00 pm
Barnes & Noble - Fiesta Trail
San Antonio, TX
2008 Assistive Technology Cluster Conference
(Keynote Speaker)
Tue, Jul 29, 2008 -- 9:00 am
Richardson, Texas
Southern Festival of Books
Sat, Oct 11, 2008
Nashville, TN
The 2008 ASHA Convention
American Speech-Language-Hearing Association
Nov 20-22, 2008
Chicago, IL
EDITED TO ADD: And possibly a conference in Detroit in July.
(More details, including links to maps, are available on my Appearances page.)
---
Book publishing party
Wed, Feb 20, 2008 -- 6:30 pm
New York, NY (RSVP required)
Fri, Feb 22, 2008 -- 7:30 pm
Barnes & Noble - Plano/Creekwalk Village
Plano, TX
Sat, Feb 23, 2008 -- 1:00 pm
Barnes & Noble - Prestonwood Center
Dallas, TX
Sat, Mar 1, 2008 -- 2:00 pm
Barnes & Noble - South Arlington
Arlington, TX
Sat, Mar 8, 2008 -- 2:00 pm
Barnes & Noble - Town & Country
Houston, TX
Sun, Mar 9, 2008 -- 2:00 pm
Barnes & Noble - Arboretum
Austin, TX
Tue, Mar 11, 2008 -- 7:00 pm
Barnes & Noble - Fiesta Trail
San Antonio, TX
2008 Assistive Technology Cluster Conference
(Keynote Speaker)
Tue, Jul 29, 2008 -- 9:00 am
Richardson, Texas
Southern Festival of Books
Sat, Oct 11, 2008
Nashville, TN
The 2008 ASHA Convention
American Speech-Language-Hearing Association
Nov 20-22, 2008
Chicago, IL
EDITED TO ADD: And possibly a conference in Detroit in July.
Coincidental booking
Holy crap, I just realized, and I mean just this moment, that I will be doing a book signing in Austin during the same weekend as the SXSW Festivals. I'm not sure what this will mean for me, other than I will probably end up sleeping in my car since all the hotels are probably already booked. Does it mean that absolutely no one will be at my signing because they'll all be at SXSW? Or does it mean that I'll have lots of people at my signing who wouldn't be there otherwise because they're in town for SXSW? No idea.
Well, if you're going to be in town anyway, I hope you'll come listen to me jabber and maybe talk to me afterwards. I'll also be in Austin for another day after that before my event in San Antonio two days later. Let's hang, yo.
Well, if you're going to be in town anyway, I hope you'll come listen to me jabber and maybe talk to me afterwards. I'll also be in Austin for another day after that before my event in San Antonio two days later. Let's hang, yo.
February 5, 2008
Pinwheeling
I did an interview for Jennifer Graf Groneberg over on her blog, Pinwheels, mostly about writing. Go check it out, yo.
Jennifer has her own book about parenting a special needs child, Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome, coming out in April and available for pre-order now.
Jennifer has her own book about parenting a special needs child, Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome, coming out in April and available for pre-order now.
February 1, 2008
Well, we were going to have this conversation eventually...
The entire Wondertime Magazine story has been posted online, albeit without the very striking and beautiful layout that you'll see in the print version when the March issue is released. It really does look great, so I hope you'll pick up a copy when it comes out.
The article is based on part of the book itself, although significantly condensed, so consider this something of a sneak peek of the book. Having said that, I feel like I ought to say a little bit about the subject matter, which might surprise some of you.
When I was told which chapter Wondertime wanted to run excerpts from, I was initially hesitant, for reasons that will become clear pretty quickly once you start reading. I mean, none of it is a secret (or won't be much longer), and if Julie and I didn't want it out there, then putting in the book would be a pretty stupid idea. We thought it was important to talk about it, though. The things we went through are the same things that most parents of broken children experience in some form or another, and pretending we were perfect people wouldn't have just been dishonest. It would have been boring as well.
When I talked to the editor at Wondertime, she expressed the same thoughts, which is why they wanted to feature that particular chapter in the first place. They felt that the problems of special needs families tend to get glossed over, which I think leaves a lot of struggling couples feeling as if they're the only ones who stumble. In the end, I came to see the benefits of centering on this section of the book, and so I proudly present our dirty laundry. Enjoy.
To Have and to Hold -- Wondertime, March 2008
(By the way, in case you weren't aware, Wondertime is actually published by Disney. I consider it a personal point of pride that I am responsible for The Mouse printing the word "asshole". Sorry, kids.)
The article is based on part of the book itself, although significantly condensed, so consider this something of a sneak peek of the book. Having said that, I feel like I ought to say a little bit about the subject matter, which might surprise some of you.
When I was told which chapter Wondertime wanted to run excerpts from, I was initially hesitant, for reasons that will become clear pretty quickly once you start reading. I mean, none of it is a secret (or won't be much longer), and if Julie and I didn't want it out there, then putting in the book would be a pretty stupid idea. We thought it was important to talk about it, though. The things we went through are the same things that most parents of broken children experience in some form or another, and pretending we were perfect people wouldn't have just been dishonest. It would have been boring as well.
When I talked to the editor at Wondertime, she expressed the same thoughts, which is why they wanted to feature that particular chapter in the first place. They felt that the problems of special needs families tend to get glossed over, which I think leaves a lot of struggling couples feeling as if they're the only ones who stumble. In the end, I came to see the benefits of centering on this section of the book, and so I proudly present our dirty laundry. Enjoy.
To Have and to Hold -- Wondertime, March 2008
(By the way, in case you weren't aware, Wondertime is actually published by Disney. I consider it a personal point of pride that I am responsible for The Mouse printing the word "asshole". Sorry, kids.)
Philanthropy and boobs
I don't know about your friends, but I know some pretty remarkable and generous people, and of them all, I can't think of one that I admire more than my friend Dana. She has been a good friend to my family and me since before Schuyler was born, and I can't think of anyone who we've been able to consistently count on more than her. I know that I'm not the only person who feels that way, too. We miss her madly.
Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.
Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.
Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.
Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.
Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.
Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.
January 30, 2008
Mmmm, new book smell
So, guess what the FedEx guy brought today?
I guess this is really happening. Either that, or someone went to a lot of trouble to tool me, printing up one copy of a book.
Nineteen days...
(By the way, I also wrote an article called "My Name is Schuyler" for the February issue of "Communication Without Limit", the monthly newsletter for the Prentke Romich Company, makers of the Big Box of Words.)
January 29, 2008
Wondertime supplement
As part of the upcoming article in the March 2008 issue of Wondertime Magazine, you may now read a web exclusive interview I did as a supplement to the print article.
If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.
No, really. What?
If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.
No, really. What?
January 26, 2008
But I'm not the only one
I attended a media party here in Dallas the other night. These sorts of things aren't always the easiest for me, and not just because I don't drink myself into "life of the party" mode so much anymore. (What was cute when I was in college would probably just be sad now that I'm, you know, thirty-ten.)
Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.
The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.
The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.
I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.
One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.
On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.
I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.
I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.
God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.
In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.
I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.
In my dreams, she speaks to me, but I almost never speak back to her.
The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.
Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.
The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.
The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.
I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.
Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.
That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.
And then you wait for it to slowly fill again, I guess.
One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.
On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.
I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.
I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.
God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.
In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.
I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.
In my dreams, she speaks to me, but I almost never speak back to her.
The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.
January 24, 2008
Schuyler speaks. Sort of.
Last month, Schuyler was interviewed by Tim Rogers of D Magazine, a cool Dallas area monthly. It was a surreal experience, in which he emailed questions and she answered with the Big Box of Words, which was attached to the computer like a second keyboard. She took the interview very seriously and crafted her answers very carefully. I set up a camera to take pictures while we did it, because I am a nerd.
The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.
There will be absolutely no living with her now...
The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.
There will be absolutely no living with her now...
January 22, 2008
A Different Kind of Normal
While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.
What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.
The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.
January 15, 2008
The Quiet World of Ice Girl Gallery
So shines a good deed in a weary world."
-- William Shakespeare
January 14, 2008
The Quiet World of Ice Girl
We went for a walk in downtown Dallas yesterday, not for any particular reason other than to visit the Crow Collection of Asian Art, which Julie had been wanting to see for a while and which was within the budgetary range most suitable for the grand Rummel-Hudson estate. (Free, of course.)
After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.
Schuyler was taken by it immediately.
She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.
Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.
Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.
But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.
Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.
After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.
Schuyler was taken by it immediately.
She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.
Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.
Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.
But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.
Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.
My housekeeping? It's good, thank you for asking.
Well, I've wanted to mention this for a long time, but I didn't expect it to happen quite this soon.
The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.
The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.
I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.
-----
While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.
Stalkers, start clearing a space in your freezer for my head. A swell hat would be nice, too.
The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.
The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.
I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.
-----
While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.
Book Publishing Party
with special guest author
Robert Rummel-Hudson
(Schuyler's Monster: A Father's Journey
with His Wordless Daughter)
Hosted by mediabistro.com
Dip
416 Third Avenue
(between 29th & 30th)
New York, NY 10016
RSVP required
Stalkers, start clearing a space in your freezer for my head. A swell hat would be nice, too.
January 13, 2008
Worst Email Ever
My friend Michael Malice has a new site that has a lot of potential for fun, Worst Email Ever: The Internet's Inbox. I made tonight's cut because of an email in which I told him that when I saw the news story about wrestler Chris Benoit murdering his family, I immediately thought of him. (Michael Malice just saw a collaboration of his published, an autobiography of pro wrestler Matt Hughes, so it wasn't an entirely random thing to say.) Michael is responsible for the description-defying Overheard in New York, after all. And how many people make this kind of impression on someone like Harvey Pekar?)
I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.
My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.
I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.
My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.
January 10, 2008
SCHUYLER'S MONSTER: The Author on God
Transcript:
Rob: I think a lot of parents with broken children find God, and they find religion. They find a spirituality that sustains them. I certainly understand that, and I certainly respect it.
For me, I've always been an Agnostic, and I think I'm more agnostic now than ever before. You know, Schuyler's situation certainly raises a lot of questions, and it shakes any faith that you might have. But I've never given up on the idea of God. Julie says that she thinks the reason I could never be an Atheist is because then I wouldn't have anyone to blame. And I guess maybe that's true.
I do have a lot of questions that I would put to God about Schuyler, about all the kids like Schuyler, the kids who have it so much worse than Schuyler, about how that could happen. How a God of love and compassion can do that. But I don't have any answers.
My faith is in Schuyler, oddly enough. Watching her struggle and watching her fight. And I don't attribute faith to some invisible person in the sky, but I do feel very strongly when I observe Schuyler.
It's funny. I'm not sure if I believe in God, but I believe in Schuyler.
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