Sunday, August 19, 2007


Okay, I've never been a starstruck kind of person. Sure, I occasionally read a gossip rag. Yeah, I get a certain amount of fun out of trash-talking certain celebrities I'm convinced are utter pricks. And yeah, once when I was in my early 20's, I created a scrapbook of Christian Slater clippings.

Through all of it though, I never had a genuine desire to meet any of these people, you know? I'm not a groupie type. I'm just not.

But I've found an actor I'd actually love to meet. For one, I love Dr. Cox. I just do. And I have no problem differentiating an actor from a role, people. I know John C. McGinley is not Dr. Cox. And if it were just his portrayal of Dr. Cox, and his other roles in other movies, I wouldn't be saying this. It's also because he's got a son who has Down syndrome and he's a Positive Landmark. Read this.

Yeah I've come up with my own terminology. Finding ways to educate myself about Down syndrome and finding ways to ensure she's growing up with every benefit possible is like wandering aimlessly without a map. I've learned over and over again that there are Positive Landmarks, things that boost my spirits, give me hope, and keep me motivated; and then there are Negative Landmarks, things that crush me, and make want to just have a sit and forget about the trailblazing altogether.

For example. Negative Landmark: A couple of weekends ago we were talking with a couple of friends who work with disabled people. I think they work in an institution of sorts. Anyway, she raved about how loving this one man with Down syndrome was, and how she loved to tickle him and make him giggle. He won't go anywhere without someone taking his hand and leading him there. It was obvious she was extremely fond of him, and she meant to be inspirational, because her point was, he was so full of love and joy, nothing else mattered. But, you know, it does matter. I'm sorry. Maybe it shouldn't. But it does. And also she mentioned a high-functioning girl there who's greatest accomplishment? Dressing herself every day at the age of 14.

And then? Positive Landmark: A German glossy magazine written exclusively by people with Down syndrome.,,1423154,00.html?maca=en-rss_english_top-388-rdf

My favorite quote from this article:

While attending genetics conference, she came upon a text about Robin Hood, hand written on one sheet of paper, by a man with Down syndrome. "He had summed up the whole story in a few short sentences. I was fascinated. How he could write so beautifully, so short yet so exciting," de Braganca said. "The writing of (people with Down syndrome) is different. It is short and always to the point, and they have an unusual point of view."

Most new moms are obsessed with their babies; it's natural. It occured to me, as I was writing this entry, that I'm obsessing more about my baby's condition than I am about my baby herself. That's true sometimes -- it's certainly true when I sit down to write.

But moment to moment -- she just amazes me. Her newest thing is to kick her legs up and down so that her Pack n Play shakes. She'll ride the shake, and when it stops, she starts kicking again to get it started. I'm certain she's trying to say "I love you", even though it comes out "Ah ohb oo", it's exactly the right amount of syllables, and exactly the right mouth shapes.

She's so much more interactive than she was a few weeks ago, even. She's reaching for everything, and when she touches things, she squeezes and strokes them. She actually watches the dogs, and looks for them when she's in her bouncy chair. She recognizes our voices, and our touch, and she's developping a definite preference for exactly how warm she likes her bottle.

And she's so beautfiul. The first thing everyone notices about her, besides her head of hair, are her lips. She's got perfectly defined lips that look like a little heart. Kipp calls them her Angelina Jolie lips, although the bottom lip is not quite that full. When she's about to cry, she sticks her lower lip allll the way out.

She's sleeping now. I love watching her sleep almost as much as I love watching her kick and listening to her chatter on and on. She's my perfect little love.


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