February 16, 2008

Monster Days


Schuyler
Originally uploaded by Citizen Rob.
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.

26 comments:

Niksmom said...

Rob, I don't know what I could say that won't come across as empty platitudes. So I'll simply say, "I understand the feelings." I do. Truly.

Good luck with all your fancy-pants press stuff and book signings. Maybe one day you'll make it to DE (I'd take Philadelphia or Baltimore...even D.C. in a pinch!).

The Meyer Family said...

I was so disappointed that the book hadn't shown up in the B&N up here in Grand Rapids -- but I went ahead and got the Charles Shulz biography anyway. Guess I'll be popping back in again later this week to demand my copy of your book! Or maybe I'll get smart and just order it from Amazon.

And when you come out to Detroit or Chicago or Grand Rapids or (God help you!) Kalamazoo, I'll bring it down for you to scribble on.

MarkB said...

Rob, so glad that Jumping Monkeys are interviewing you! I emailed them a few weeks ago telling them they had to talk to you (a bunch of others did too, no doubt!).

I look forward to hearing it :)

Anonymous said...

I'm excited for you and Schuyler and even though I don't know, first hand, how you feel -- I understand what you're describing. I wish you all the best and will be thinking about you this week, especially Tuesday. I'm really looking forward to a terrific review in People.

Jim Howard said...

I am extremely disapponted that I have a shedule conflict that precludes me attending the first Austin signing, but I will be there on March 09, 2008 for sure!

Jim

PeanutandSweetPea said...

I hear you on wanting to hear a "good morning". My little guy gets up and comes into our room and is so quiet, doesn't say a word and crawls in bed. One morning I woke up to the though, "that must be the cat on my legs", but I haven't had a cat in years! His quietness is eiry sometimes.

Yesturday our speech therapist said she finished her report for Andrew to get his "big box of words". I hope it gets approved and we get the box soon. But realistically it will be months.

I have called the book stores around Tacoma area, no one has it yet. Can't wait to get it. Good luck with all your engagements!

Earline

Jim Howard said...

Just to avoid confusion, I should have written that I am sad that I can't attend the 'first TEXAS signing', which I think is in Plano.

If I read the schedule correctly Rob doesn't come to Austin until March.

Rob, if this adds confusion, please delete this comment.

Anonymous said...

I'm reminded of the Mastercard commercial where a dad buys one type of sports equipment after another for his son, only to have him suck and be miserable at each attempt. The last scene is the dad shouting "YES!" at his son's chess match. We all start out thinking our jobs as parents are to give our kids to have every advantage. And we all have to come to terms with the fact that we can't do it. We can't make them smart, funny, athletic, beautiful, or even healthy. What our jobs really are is to love them, and to help them overcome their disadvantages. It's bittersweet and sometimes heartbreaking work, but it's the most important work there is.

Allison said...

I am coming to the NYC Media Bistro Book party and I am SO EXCITED for you. :-D Can't wait. See you there!

-Allison
www.lemonade-life.com

Amy Lynn said...

Have a GREAT week, Rob. You deserve it. And see you in NYC.

Jennifer Good said...

Hi, I just wanted to say I just read the blog blurbs in Good Housekeeping magazine, and I had to check out your blog. I'm 22 years old and I have NF1, a neurological disorder (just in case you didn't know) and it's had not as big an impact on my life as your daughter, I've gone through similar things. When I was diagnosed when I was two, doctors told my parents I would never make it past the communication, mental, learning, or social capacity of that of a 6 year old. I'm now about to graduate with my Bachelor's degree from the Culinary Institute of America and am looking to become a food writer in a magazine. So much for diagnosis's. So I just wanted to say while I don't fully understand, I do a little. I just wanted you to know that the doctors and the teachers were wrong, too. I think people severely underestimate children and people with neurological disorders far too often and should know by now to know better. Thank you for taking the time to read this and thank you for writing this blog.

Jenni Robinson
www.jennithebaker.blogspot.com

Anonymous said...

Whoohoo! Just got a notice from amazon.com that your book was shipped and should be at my door step on Friday. I can't wait.

Elizabeth said...

Hey Rob-

I started reading your online journal right when Julie got pregnant. I feel like I have been on this journey with you all these years, even though I have only emailed a few times. I couldn't be more excited for someone in my real life. I just bought your book on Friday at my local (Atlanta suburb) Borders and am about halfway through. I am struck by the things that you didn't share in your journal - how even more deep and intense things were beyond the glimpses your readers got (which felt pretty darn deep and intense). I think the book is great - I've always loved your writing but this book (like your blog in the last year or so) is more mature, polished, evocative. Good luck in the weeks to come - and enjoy this time. You deserve it.

Angel The Alien said...

I read a book excerpt of yours in a magazine the other day! I can't read the whole thing!

moplans said...

Rob I've stopped by a few times before but never commented. I just read the excerpt you linked to and cannot wait to read the book.
My daughter also has a rare condition and I hope that she will exceed my expectations just as Schuyler continues to exceed yours.

Amy Linder said...

Rob -

I'm so excited! I bought my book today and started reading it on the way home. It's wonderful! I also read your Wondertime article while we were in the B&N cafe. I'm so thrilled to be reading your book. You, Julie and - of course - Schuyler are all true inspirations.

Have a wonderful week! Congratulations.

Amy

Michelle said...

I hope all goes well for you this week! I hear in your words all the time that you would give anything to take Schuyler's monster away from her - give up all this to hear her sweet voice...whatever that may sound like. I like the fact that you have given her a voice. That this book, this blog, these words are touching countless numbers of people and helping to educate them on "broken" children. I don't see that changing once all of the book hub-bub dies down. I think you will continue to be her voice...and what I think would be really, really cool is if book 2 were one that you and Schuyler wrote together. How's that?

Anonymous said...

I'm bummed because I wanted to come to the book signing in Arlington, but we had a just about last minute gig come up for the first two weekends in March. *sigh*

Anonymous said...

Amazon tells me that my copy has been shipped...

Best wishes this week - to all three of you!

Anonymous said...

Please come to Pittsburgh!

Lucky said...

Rob, I can relate to your feelings each day. On so many levels- I am scared each day that Rachel will begin the seizures that may some day haunt us. To hear the MD last week tell us that she may never speak or may not be able to use pictures to communicate. The whole thing sucks, yet each day I look at my beautiful daughter and her will and determination each day that keeps me going. Come to Boston!!

Melanie said...

Good luck with the NYC trip. I checked in at the B&N at Stonebriar today and they didn't have any copies yet -- I'll just have to hit Julie's B&N tomorrow.

Laura said...

I hope everything goes well for you this week! I'm very happy for you. Enjoy the media attention and book signings and all of the other fancy-pants stuff!

I really look forward to reading your book. Your blog is very inspirational, and I look forward to reading more about you and Schuyler.

Oh, and if you run out of ideas for book signing locations, Northern Virginia and Washington D.C. are both great ideas!

Anonymous said...

Well, if it's being shipped to the UK then I'll do a test case for the Netherlands! Looking forward to be reading. Wishing you great times for all exciting events coming up.

Anonymous said...

Rob, have you seen this article?
http://abcnews.go.com/Health/story?id=4311223&page=1

I know it's a very different disorder but really speaks to the amazing the power of giving a person a voice.

Unknown said...

HI Rob!!! It's me, Becky, with son Ricky who has cystic fibrosis. I wrote to you back in December. I just wanted to tell you that the book came in the mail today (I had preordered it through Amazon) and I was so excited that I started jumping up and down. I'm going to start reading it today.

I am disappointed that you won't be out here in California, but at least I get to read the book. :)