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Thinking Out Loud | Articles - Multi | D Magazine

Link: Thinking Out Loud | Articles - Multi | D Magazine.

Robert Rummel-Hudson lives in Plano and serves as the coordinator of communications for UTA’s School of Architecture. His 8-year-old daughter, Schuyler (pronounced Sky-ler), has polymicrogyria, a neurological disorder that has deformed the speech center of her brain, making it impossible for her to talk. This month brings the publication of his well-reviewed, touching memoir, Schuyler’s Monster: A Father’s Journey With His Wordless Daughter (St. Martin’s Press). A week before Christmas, D Magazine asked Schuyler a few questions via e-mail. She uses a device called a Vantage Plus that also speaks words she types.

Best Thing I've Read Today

"After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words.

WHat happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl." [Schuyler's Monster: The Blog]

Beautiful post

"Schuyler has always had a strong association with Christmas, being born four days before. It's no coincidence that her middle name is Noelle.

I took her to see Santa today."  [My Beloved Monster & Me]  Lovely post -- go read it!!

In Defense of Rachael Ray

. . . not that she needs it. . . I visited the Boston Globe page today to check out a work-related article, and saw a link to an article about R.R.  It talks about a LiveJournal community dedicated to their dislike of Ray.  (I tried to post a comment there, but it's set to "friends only" commenting.) 

I can understand creating a fan site because you like someone or something, but it seems like a lot of generation of negative energy to continually look for bad things to say about someone you don't know.  [Editor's note: Complete disclosure: I do occasionally post negative things about people here (often someone with the initials GWB, who, frankly, deserves it) -- I'm no angel -- but I don't base the whole site on that.]

I really like Rachael Ray.  I'm not inspired by each and every show, but I always learn something I didn't know and I have incorporated a few of her recipes into my regular routine this year. I like her on-air personality because she seems down-to-earth and talks about how certain foods or ingredients remind her of special occasions or family members.  Of course she has some shtick -- tell me anyone who's on television for the number of hours she has been who hasn't repeated themselves or who doesn't have a catch phrase or two that drives you a bit nuts. 

To the folks who have nothing better to do than post negative things, I challenge you to find someone or something to praise and write about that.  Create an "alternatives for people who aren't inspired by R.R." site or something.  Tell us what chefs you think are talented.  Write about your favorite recipes.  Generate something positive. 

What is a Conservative?

"Sullivan has. . . been forced to ask himself the question that many conservatives have been forced to ask themselves: If I am a conservative, and I detest many of the things this conservative administration is doing, then what kind of conservative am I and what kind of conservatives are they?

“The Conservative Soul” is Sullivan’s answer to that question. His book is important, not only because he is willing to re-examine his own views relentlessly, but also because this is a moment when conservatism is in tumult, with old alliances breaking down, new divisions widening into chasms." [Books - Review - New York Times]

R.I.P Jessica

"She was thirty-three.

Her name was Jessica."  [Cancer, Baby: Goodnight, sweetheart] 

I did not know this woman and didn't encounter her blog until after she passed away.  I'm not entirely sure why I'm posting a link. . . her writing is vivid and sad as she writes about her journey toward motherhood that turned into a cancer battle.  She wanted what so many of us want -- a family, a long, healthy life full of the things long dreamed of.  But on Mother's Day weekend, she passed away.

Independence Day

"On our way home, I asked Schuyler if she enjoyed ordering her own food like a big girl. "Yeah!" she said, using one of the very few words that she can articulate within the very narrow range of sounds that her monster will allow her to produce. Then she started one of her monologues, gesturing and jabbering excitedly in her strange little moon man language. It breaks my heart, of course, knowing that she's got so much to say and I'm missing almost all of it. I listened and I watched her as we drove along, nodding when it seemed appropriate." [Independence Day]

Go read this post.  Seriously.  Beautifully written and heartbreaking.  And reminds anyone who needs reminding to savor the special moments we're blessed to spend with loved ones.

I say, Amen, brother!

Ø    "Don’t apologize for cutting back on blogging. There’s no need.

Ø    You might let us know if you’re formally terminating a blog, but there’s no need to point out you’re disappearing for a week or a month—unless you’d like to mention why. (Congratulations to Cindi and Adri!)

Ø    Maybe it’s time for some of us to abandon target frequencies for blog posting. Maybe the target should be to say something worthwhile or amusing in each post.

Ø    You define what’s worthwhile. People will pick you up if your definition has some overlap with theirs. (I’m not sure I care much about anime, but I read bloggers who write about that as well as topics that I do care about.)

Ø    There’s nothing wrong with metablogging (writing about blogging). There’s nothing wrong with posts that don’t do much more than link. There’s nothing wrong with posts that don’t have links at all. There’s nothing wrong with maintaining big blogrolls—and there’s nothing wrong with omitting blogrolls entirely. There’s nothing wrong with going two days, a week, a month between posts—and then writing six posts totaling 5,000 words in one day, if that’s what you need to do. There’s nothing wrong with essay posts.

Ø    If anyone tells you that you’re not really blogging if you do any of the things in the previous bullet, ignore them. Blogging is a tool. It’s not a narrowly-defined medium."
[Walt Crawford: Cites & Insights 5:13]

Looking for a "good news" story?

Link: The village.

Believe in the power of yourselves to change the world. It may not seem like much, helping one little girl in the whole grand rough world, but from where I'm standing, it seems enormous. It might just be the most amazing thing I've ever seen.

Schuyler's Fund

This is probably the first time I've ever mentioned something like this here.  I don't know this family personally, but I've read the father's online journal for years now.  He and his wife are trying to buy a tool that will help their daughter communicate.  The little girl's school system may not be able or willing to spring for what she really needs.  She has a very rare disorder that interferes with her ability to communicate with speech.  If you're feeling like doing some monetary giving at this holy season, I point you to this page: Schuyler's Fund.  For you skeptics out there, this definitely isn't a scam.  (I'm going to donate myself, once I sell a few extraneous belongings on eBay!)