Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
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May 16, 2008
Getting Schuyler
I never know what I'm going to write about here, and really, it could be anything. (My elderly but faithful car Beelzebug is going to get a post soon, after all.) But in general, there have been two kinds of entries that come up the most in recent months: Schuyler and Schuyler's Monster.
I make no apologies for writing about the publication experience, by the way. If I am blogging about my life and in particular my life with Schuyler, then the fact that it's a memoir, and more specifically a memoir about her, means that when people say "We want to hear more about what's going on with Schuyler!", this is a huge part of what's happening right now. So yes, in general of late, you've gotten a lot of two things. Either I'm trying to make Schuyler come to life for you, or I'm talking about the book and its media exposure.
Tonight, I'm happy to announce that I'm going to do both.
The story that Fox 26 Houston reporter Greg Groogan and special projects photographer/editor Matt Matejka put together was broadcast earlier tonight in Houston. It looks like it's going to run in some other markets, including the Dallas area, so don't be surprised if you see my big, white, doughy Robba the Hutt head on your tv soon. And possibly during the dinner hour, too, for which I can only say that I'm truly sorry. It doesn't exactly do my poor heart good either, looking at that face every morning. You at least get to look like you.
It's a different kind of story than has been done before, I'll say that right off. It's of a somewhat higher pitch emotionally, for example. But I like it, and the primary reason for that is simple.
They captured Schuyler. In the short space of the story, and really mostly in the latter half of the story, they show the Schuyler that I know and love and have been trying for all these years to show to you.
A lot of people are curious about her. They want to see how she talks and how she uses her device, and they want to know some very simple things. For the people who have come to feel emotionally invested in Schuyler (and I am learning that there are more of them than I ever imagined), they want to know most of all that she's happy.
And if there's nothing more that you take away from Greg's story, I hope that you'll see just how happy she really is. I see Schuyler's happiness and I want it for myself, I want to laugh like that every day of my life.
And the funny thing is, because of Schuyler, I usually do.
Thanks, Greg, Matt and everyone else at Fox 26.
MyFox Houston | Schuyler's Monster: Texas Dad Writes Book About Child's Disease
What a wonderful segment! The only part I'm not so sure about is the literal monster imagery that they kept playing. I like my metaphor a little bit less literal. :)
ReplyDeleteThats such a nice piece. Its great to see Schuyler, shes such a wonderful little girl, she could charm the socks of anyone. But really, its really well put together and honest, quite deep! I love it!
ReplyDeletefantastic. thanks for posting it for us non-texans :)
ReplyDeleteIt is wonderful seeing Schuyler in motion. The still photographs don't give her the same spirit that her movement, her hands, her expressive in that piece does. The way they weaved your relationship with God through the segment seems so very American. I've lived in the UK for 6 years now and it is a rare show that comments on a turning from and returning to faith.
ReplyDeleteOh my. The monster stuff did sort of cross the line into hard-core cheese, but I loved seeing and hearing Schuyler in action. Thanks for sharing the clip!
ReplyDeleteThat was awesome,thank you for the insight.
ReplyDeleteI loved it! It was very cool to finally see Schuyler in action, and she is just adorable. Thanks for posting this for us that don't live in Texas. I really enjoyed it.
ReplyDeleteGreat story! You have such a beautiful daughter. I love it that you say she's taking ownership of her weirdness. We should all be as wise as Schuyler.
ReplyDeleteWow, I get it :) What a fantastic laugh she has! It's exactly how I imagined it while reading the book. Thanks for sharing!
ReplyDeleteBeautiful!
ReplyDeleteShe is looking more and more like Julie every day!
ReplyDeleteAlaska Kim
Oh, my heart, my heart.
ReplyDeleteThank you for linking to that story, Rob; it was wonderful. And thank y'all for all the work you're doing to help other parents and kids. You've not only helped to give Schuyler her voice, but you and Julie and she are giving others voices, too.
We love y'all.
Kisses from Tennessee.
Look at that gorgeous girl! Watch out Hollywood, there's a new heart-throb in town!
ReplyDeleteWow that is a great Segment.. I am right in the middle of your book now.. it gives us a better persective on just how great and happy Schuyler is!
ReplyDeleteThank you! That was great!
ReplyDeleteThat was awesome. Seriously. She's magical and illusive and impossible to take your eyes off. And I love the use of the T-Rex in the piece.
ReplyDeleteWow, they did a nice job. What a wonderful portrayal of Schuyler...she is delightful.
ReplyDeleteLove it... especially the baby photos! Looks like Schuyler got a manicure, so sweet!
ReplyDeleteThat was lovely!
ReplyDeleteThat piece was beautiful. Thanks for the link. And after reading the book I now want to read it all over again with the beautiful image of your family on the bench in my mind.
ReplyDeleteThat was a great segment. Y'all need to be on 20/20 or 60 Minutes or something so we can see even more!
ReplyDeleteIt was such, such a joy to finally really hear Schuyler's voice and see her laughing right along with her movements - she has such a strange kind of delicate sense of motion and it was so touching to see it in action. Great clip! Thanks for sharing it with us. :)
ReplyDeleteLong term lurker emerging to say how much I liked the clip :) Her personality and spirit shone through so clearly!
ReplyDeleteThank you for sharing that. I'm in agreement with everyone who said it was great to see Schuyler in action! I'm actually in the middle of your book right now and think it's amazing.
ReplyDeleteThat was a really excellent story. Thank you for sharing a link so those of us outside TX could watch too.
ReplyDeleteThe news segment was very good...Schuyler's spirit spoke loud and clear!
ReplyDeleteThe video took forever to load on my computer, but it was totally worth the wait. Wow.
ReplyDeleteNow if you'll excuse me, I need to find some kleenex.
Wonderful. She is so stinkin' tall, isn't she?! Goodness. I never pictured her so lanky.
ReplyDeleteThanks for sharing all of this, Rob. It is so wonderful to see.
So many times over the years, when I read about Schuyler, I cried. This piece made me smile.
ReplyDeleteShe is an amazing girl!
The beauty of her spirit and the purity of your love both shone through so clearly. Beautiful and moving.
ReplyDeleteI loved it.. thanks for sharing
ReplyDeleteI don't even know what to say - it's like meeting an old friend you haven't seen in a long time, and then realizing that you'd never met. Part of me feels that I know you, and know your family, but it's only through your blog and book. Thank you for sharing Schuyler.
ReplyDeleteI've been reading/lurking around your blog since my interest in medically necessary blogs entered my life when our daughter was born. Love it, love your truth, spunk and general love of your child. And what'ela know I was watching the news tonight and there you were!
ReplyDeleteCaleigh's Blog
www.hollydgray.blogspot.com
Tonight? Really? Where did you see it? (You can email me if you don't want to advertise where you live here.)
ReplyDeleteI live in Arlington, TX so it was on Fox, I think the 9 0'clock news. Hope this helps!
ReplyDeleteThis is the first time I've heard Schuyler's voice and the beauty of it made me cry.
ReplyDeleteThat was such a wonderfully well done piece and it was great to see Schuyler in action. Although a tad cheesie, I did love that they used her dinosaurs in the segment too. Everytime I see those dinos in a toy store, I think of her.
ReplyDeleteYou guys are so lucky, she is wonderful. I sat and cried when watching the interview. It is all very overwhelming isn't it? You are familar with my son Daniel (2 1/2), you did a post on him a while back, he has the same diagnosis your daughter has, unfortunately Daniel has some of the other things that come along with his PMG (seizures, cerebal palsy, developmental delays). It is so inspiring to see how well she does with her device. We are getting Daniel's device in the next couple of months, most likely the same one Schuyler has, and I can't wait to see how well he does. I can only hope that he is able to fight his monster as successful as Schuyler seems to be doing with hers!
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