Thursday, February 28, 2008

Birthday wishes

Thanks, everyone, for the birthday wishes. I had a good time yesterday with Annie and the kids, driving out into the country, looking for a new corner to explore.

If you're a regular here, you might have noticed that I've been a bit quiet the last few weeks. I just decided one day to step back, take a breath and chill for a change. I'll try to get back into the rhythm of blogging here in a few days.

Sunday, February 24, 2008

Indie coffee shops

We usually spend Sunday mornings at a coffee shop; either the Turtle Bread or the French Meadow. If you're tired of Starbucks, I found a cool little website that maps out all the indie coffee shops nearby; it works in almost any US city.

Thursday, February 21, 2008

Stairs bookcase

If I had a house and an extra wad of cash, I would totally copy this person's design for a bookshelf.

See more of the pictures here.

Sunday, February 17, 2008

Out of the office

It's almost 8pm and I'm at the office, getting ready for tomorrow's shoot. I'll be out until Wednesday. See you then. Oh, and pop over to Annie's blog; she's got a doozy of a tale coming up.

Saturday, February 16, 2008

Global filmmaking

For all you armchair travelers out there, a buddy of mine who I used to host a documentary discussion group with before he bailed from Minneapolis to work at National Geographic (bum) is blogging about his whirlwind trip over in Turkey, amongst other places. He's a talented documentary filmmaker; check it out.

Marriage

Someone sent this to me; it was in the Star Tribune yesterday.

A big thanks

Silvi stayed the night with my parents; she does this every other week or so. She loves it, as do they.

My parents just love Ian to death. Unconditionally. From the moment he was was born, they've never treated him differently because of his Down syndrome. They play with him; make him smile that big toothless grin that lights up his entire face.

I know how fortunate I am to have such parents. Their immediate acceptance of my son is exceptional. I know there are other's who aren't so fortunate.

So I just wanted to give my parent's a big thanks for being such awesome grandparents. Your grandkids adore you both. And I, well, I think you're pretty OK too.

Friday, February 15, 2008

Success!

Annie and I finally had a date night all to ourselves without interruption. We dropped Silvi and Ian off over at my parent's place and went to the Indian Palace for some of the best food to be found this side of New Delhi. We gorged on chicken and rice and strawberry and mango juice. It was the perfect post-Valentine's Day date.

Ian did awesome; Grandpa entertained him with Itsy-Bitsy spider until he fell asleep, sprawled out next to Grandpa. Made Annie and I so happy we did the Kathak dance of joy. Well, maybe we just did a little ho-down jig on the inside, but it was a dance nonetheless.

Next week? The movies.

Non-actors

In addition to the five actors I hired from a local talent agency, I also have to use two non-actors for my shoot on Monday and Tuesday. The client insists that they play a prominent role in the production, including pages upon pages of speaking parts. There are dark mysteries at the heart of large corporations that I have yet to fully comprehend.

I've worked with many non-actors in the past; but most of the time they were in their natural working environment and had few, if any, speaking parts. Like the time I sat inside a gutted Cessna plane - the pilot holding onto the back of my safety chute so my 20-pound camera and I wouldn't fall out of the open door - and filmed a group of skydivers jumping into the void. Or the time I filmed a cryogenic prostate surgery with a room full of latte-drinking doctors as they "violated" the poor patient.

Those are perfect examples of when it is proper to use professional "non-actors." But anytime a person has to act, I always insist on hiring actors. It just makes the shoot go so much smoother, and the final product that much better. Like the time I was shooting a kids show in Colorado and had James Earl Jones (yes, I'm name dropping) deliver his lines... twice. (with that voice, just ordering a cheeseburger conjures up scenes from a Shakespearean play.)

I have a feeling that I'm going to eat up a lot of tape next week. And find a few more gray hairs.

"Take 23! Roll cameras. Speed. Action!"

Thursday, February 14, 2008

Annie's Porch

My wife's (finally) up and blogging; find out what it's really like to live with me every... single... day over at www.anniesporch.blogspot.com. And just ignore the picture of James Denton.

Wednesday, February 13, 2008

Dream crusher

I'm pinned by my workload right now, squashed under the weight of a hairy, sweaty giant I call The Deadliner. Spent the morning auditioning about 10 actors for a marketing video I'm directing next Monday and Tuesday. Hard to tell people they're just not right for the part. I'm a dream-crusher.

Editing an hour long video today... been working on it forever. Training piece. All the projects are piling on at once, like a horde of desperate bridesmaids pouncing on a tossed bouquet. Like that? Even under the gun I can still whip out a flowery simile.

Pun intended.

Tuesday, February 12, 2008

A Joke Too Far

I love dark humor. But my wife's response has got me second guessing my Jerry Lewis comment about Ian. I told her that with a dad like me, Ian is totally going to laugh at my joke someday.

I hope.

Annie burst out laughing when she first read it; I've warped her. Then she said that now she will definitely NEVER give out my blog address to her new group of friends in the DS group. (Or at least not without a warning.)

So was it a Joke Too Far?

Hi all, Annie here... OK, so I laughed really hard at Tom's entry, but it was the kind of laugh that you do whilst covering your face in hopes that no one is watching you laugh!!! ;0)

(Tom here again... I am totally sleeping on the couch tonight.)

Hey ladies!!

Ian failed his second hearing test today. We have to wait three more months to test again to allow his ear canals to widen. We know that he hears us, and especially hears Silvi, but we're not sure how well yet.

Also, he "failed" his vision test. He thought the "2" was a "Z." Ha. But he does appear to have myopia - or near-sightedness - and will most likely need glasses.

We're praying that he will have buck teeth as well; our plan to bring another Jerry Lewis into the world is nearly complete.

Hey, buddy! You just lost a vote!

I have a rule about political bumper stickers and "Jesus fish" emblems.

Don't do it.

I don't care if you're the world's most courteous driver. If you're on the road, you're in my way. A guy in a SUV with a Jesus fish cut me off on my way to getting my 99¢ cheeseburger from Wendys. And no one should come between me and my small vanilla Frosty. Especially not the lady with the peeling 'Gary Hart for President' sticker on the back of her tan Chrysler LeBaron.

I don't know what you're up to these days, Mr. Hart, but that lady cost you a vote.

Poll results


[Updated: At the bottom]
The results are in (if you haven't voted yet, feel free to cast your vote anyway; unless you're going to start belting out "The hills are alive...").

I aligned myself with Napoleon Dynamite. It's nice to be in the company of four other people who also wonder if chickens have large talons and are pretty good with nunchucks. We're a pessimistic bunch, yet are also known to bust a move when the chips are down.

One vote for Britney Spears. If I could give her some advice, I would tell her to stay out of the spotlight, take some time to ground herself, work out a good medical treatment plan and surround herself with people who know and care about her. I hope this voter has these kinds of opportunities available to him or her.

Three votes for Too Depressed to Answer this Poll. I was surprised by this. I thought more people would hit the Shaggy or Bill Murray range. It seems like a lot of people are either "hot" or "cold;" not too many "the water is fine" people in this poll. Like Britney, you are lacking good relationships that might help you start singing "I'm alright, nobody worry 'bout me" with a certain groundhog.

One Stallone. Not too depressed but not happy either. And, like Rambo, willing to go it alone, often by force.

One Shaggy. One person is pretty content with his or her life, as long as there's a sandwich close by and a few Scooby snacks to pass the time.

Two Bill Murray's out there. You are generally happy with your lot in life, but the burrowing groundhog keeps you from prancing about like Julie Andrews.

A solo Belle dancing alone with the Beast. You're happy most days, although at times the castle walls make you feel trapped. And you just know that under the big furry exterior, there lies a prince waiting to carry you away from all those chickens with sharp talons.

A couple of Julia Robert's laugh out there. You find lots to laugh about, and always enjoy a good bubble bath. You like to live large and find pleasure in playing and the "toys" of life, like limousine rides and the occasional diamond necklace.

Five votes for Sally Field's happiness! I was surprised that so many people are this content with their lives. Not skipping through the hills with the Von Trapp family, but lots of smiles and many warm "Places in the Heart." You have many good relationships and know that your friends and family "Really like me... you really like me!"

One Sound of Music. I'd use caution when reading this blog; it may have you hunting for ligers soon enough, which we all know is a cross between a lion and a tiger... bred for its skills in magic. And you may want to cut back on those "crisp apple strudels and schnitzel with noodles;" all those calories tend to creep up on you. Wouldn't want you to tumble a few notches down the poll. Or would I? :)

Thanks for participating, everyone. Seems like you're either "happy and you know it" or, like me, you think your milk tastes like the cow got into an onion patch.

12:30pm [ANOTHER person voted for the Sound of Music. You're just trying to tick me off, aren't you? :)]
3:30pm [Now I know you're messing with me.]

Monday, February 11, 2008

Poll: If you're happy and you know it...

I'm dissatisfied in many areas of my life right now. Blame it on turning 40, on my general predisposition or on all the stuff we've been through as a family lately. I'm wondering how many other people are in the same funk as I am. I made this poll to find out. No one will know who votes, only the totals will be calculated.

How satisfied are you with where you are in life? (Participants remain anonymous)

Julie Andrews in Sound of Music
Sally Fields getting an Oscar
Julia Roberts' laugh in Pretty Woman
Belle in Beauty and the Beast
Bill Murray in Caddyshack
Shaggy from Scooby Doo
Stallone after reading Rambo reviews
Napolean Dynamite
Too depressed to answer this poll
Britney Spears


(View Results)

Create a Poll

Movin' on up

Someone is starting to dig the real grub. Sort of. Soundtrack provided by Silvi-Mix-Alot.

video

Sunday, February 10, 2008

Pot luck

I went to the Down syndrome group pot luck yesterday. Wasn't going to go but felt better about life in general after watching The Last King in Scotland. Not sure why or how they are related.

Not glad I went. Glad I went.

Good to go and watch Silvi have fun with the rest of the kids. Good to do something out of the house with Annie and Ian. They held it in a YMCA gym, with lots for the munchkins to do. About ten families showed. We played hoops, chased the kids, climbed on the indoor jungle gym, ate the typical - and very tasty - mish-mash of servings that no choice of wine would ever quite complement. Cup cakes and cookies to top it off.

Not going to make it a habit, mind you.

"No man is an island," you say? Had I been in Tom Hank's shoes in Castaway, "Wilson" would have been looking for a new home within the first week of washing ashore.

Friday, February 08, 2008

Film recommendations for the weekend

If you're one of the fortunate ones who actually get to watch films in movie theaters, I've got two recommendations. Persepolis is playing in many art house theaters and is an amazing story about a young girl growing up in Iran during the 70's and 80's. It's so well done that you actually forget that you're watching an animated film and truly identify with the characters.

The second film, which still might be showing in some cities, is The Diving Bell and the Butterfly, based on a true story about a man with a debilitating disability. One of the most visceral films I've experienced, it is going up on my Top 10 list of favorite films. Made me love being alive.

If you're stuck at home, try The Namesake, a film about a family from India trying to assimilate to life in the US. From the same director who made Monsoon Wedding, another must-see.

Crossing Tahoe

Will at Blueberry Shoes Films has posted a few minutes of his documentary called Crossing Tahoe: A Swimmer's Dream over on his site. It's definitely worth a look.

Chicago shoot

I made it to Chicago around midnight on Wednesday night. A snow storm forced hundreds of flights to be canceled and I was rerouted through Memphis where I spent about 4 hours reading John Irving's classic, The World According to Garp. His other well-known book A Prayer for Owen Meany is on my top 10 list of favorites.

Our client put me up in another classy hotel, the kind where they give you a warm chocolate chip cookie when you check in (which I regretted eating at midnight). After a great breakfast in the hotel restaurant, we drove to our location so that I could light the "set." Which in this case was an old warehouse right out of the last scene in the original Terminator film. Dark and cold, piles of steel everywhere, steam coming out of various pipes.

It took about an hour to set up, three hours to shoot the marketing video, half hour to tear down and then back to the airport. I got some pretty cool shots of the product against the eerie background with steam pouring out of the ground.

I'm back at my desk, waiting for the computer to compress a dvd I'm authoring - a documentary recorded in four languages that I have to figure out how to fit onto a single dvd.

This weekend it's dropping back down to -15; guess we'll be looking for things to do inside. Annie wants me to go to a pot luck with the Down syndrome group tomorrow.

I feel a cold coming on.

Wednesday, February 06, 2008

Chicago

I'm heading to Chicago for a shoot... I should be able to respond to some of your comments on Friday. Cheers.

Tuesday, February 05, 2008

Self-advocate

A lot of people commenting on my blog have raised the issue of allowing people with Down syndrome to advocate for themselves. So I started looking. I just wanted to find some "every day" people who are just living their lives, and I found that in Josh, a 28-year-old man with Down syndrome, who, with the help of his brother and friends, makes videos that are creative, fun and (I think) thought-provoking. Just so you know, in his own words, it's not for the politically correct crowd. (He does a series called The Retarded Policeman, in which he stars.)

(And although I hate doing the *warning* thing, I know I have readers from lots of backgrounds; if you can't stand four-letter words and off-color humor, you should probably skip Josh's videos. But I hope you don't.)

Enjoy. (He has tons more videos on his YouTube page, too, where he says, "...i want to act for my life because i love it so much. my bro and i make great films together...)

Learning to crawl

Last night was a painful reminder that Annie and I are still learning to crawl.

After the meeting, we had our most intense fight since Ian was born. (I asked Annie if I could write about it; I think the pot flying past my head meant yes.)

We drove in separate cars to the school where the Down syndrome group was meeting. I came from work and Annie - borrowing her mom's car - came with the kids from her sister's birthday party. I got there fifteen minutes early and waited to help Annie in with the kids; I sat in the car and watched as about 20 parents filed in, most with their kids. Last night they had a guest speaker - an 18-year-old with Down syndrome was there to tell us about his life in high school.

Annie was running a little late (she had mentioned that she probably would be because of the party) and with each passing minute I was getting more and more agitated. By the time she arrived I was in what she calls my "quiet rage." Talking through a clenched jaw, eyes shooting laser beams. I told her, like a sulking little boy, that I was going home. With a gentle but immovable determination that made me fall in love with her in the first place, she quietly said, "No, you're not. We're here and we're going in there."

Fine. (Jerry McGuire voice again.)

By the time we got in the classroom, the young man was talking about his experiences, showing us his Letterman jacket, pictures of his girlfriend, of his friends, awards he had won. His parents shared about how they had to battle with the school officials to allow their son full inclusion in a variety of activities. It lasted about an hour and there were many kind and open parents there. After a little chit-chat, we left in separate cars again.

When we got home and put the kids to bed, Annie and I had a short but intense "discussion." Neither of us are screamers, but let's just say that there are some sailors who would be proud of our language and that something was thrown. Not AT someone, and not something breakable, but just thrown out of sheer frustration.

OK, that's what happened. After we calmed down, and actually began laughing at ourselves for falling apart so spectacularly, we talked about why it happened.

As I was sitting in the car waiting for Annie, watching all those parents walking into the building with their children with Down syndrome, I was just kind of freaking out. My world is "fine" when it's just me and Annie and Silvi and Ian, but it starts to crumble a little when we let others into that "safe" little world.

Annie said she flipped out because she's been running non-stop (today is a visit from the therapist and a visit to the eye doctor) and that when I flipped out, she lost it. We've been "managing" our lives, but not really thriving. Making it.

In one way, last night had to happen. It's that "boiling point" cliché. I won't speak for her, but I think we were able to let go just a little more last night. So, in a way, it was good to go to the group. Because it definitely reminded us that we are still learning to crawl.

Monday, February 04, 2008

Fine!

(This post should be read with the scene of Tom Cruise flipping out in the men's room in Jerry McGuire as the background).

Fine! I'll go to the Down syndrome group tonight. Fine! But if I like it, I'm not telling ANYONE! And I don't want to hear, "I told you so" from ANYONE either!

Fine! Fine!!

Heavy

It's been a heavy week for me as I've been wresting with the thoughts I wrote about in my last three posts.

It was nice to get away from all that in what turned out to be a pretty good Superbowl game (unless you're from New England.) We all went over to my parent's place to watch it, as they are avid football fans. (Green Bay all the way.) Grandma had fun making Ian smile and Silvi had fun eating all the sweets she can't get so readily at home. I'm not a huge Tom Petty and the Heartbreakers fan, but my mom enjoyed them. My favorite commercial was of Stewie and Underdog going after the same bottle of Coke. It was a relaxing Sunday overall (after assembling Ian's newest crib, I should say.)

This week I'm editing for a training dvd and have a video shoot in Chicago on Thursday - another one-nighter. Business as usual. Annie is trying to talk me into going to a Down syndrome gathering tonight... I'm still undecided. (Yes, I'm blaming you again, babe.)

Man, it's going to be so nice when I can go at least one day without thinking about Down syndrome. Maybe I'll start riiiiight now. I mean, now. Now. Definitely now.

After lunch.

Saturday, February 02, 2008

What is it?

[Updated at the bottom of the post]

(This post contains some descriptions of a film that I attended last night - featuring a cast comprised almost entirely of people with Down syndrome - which might offend some of my readers.)

I got into an argument with Crispin Glover last night.

Most people remember him from Back to the Future and Charlie's Angels, but he's trying to change that.

He's here in Minneapolis showing his film What Is It?, a surrealist film featuring a cast comprised almost entirely of people (most are non-actors) with Down syndrome. Preceding the film, Crispin performed an hour-long live dramatic presentation of his "Big Slide Show" which features readings and illustrations from eight of his books.

The NC-17 film centers around the exterior and interior journey of a young man with Down syndrome. Glover appears in the film playing the role of "Dueling Demi-God Auteur and The young man's inner psyche." The main character is on a quest to replace his pet snail that he killed by smashing it against a pane of glass. He has an obsession with snails, and spends much of the film pouring salt over them and watching them shrivel up and die or cutting them with a razor blade. During this quest, his inner life of torment is represented by two dueling Demi-Gods - Chrispin, sitting on a throne surrounded by concubines with Down syndrome, and a white man in black face paint who injects the blood from snails into his face. The main actor's mind is represented by a cloudy realm with naked women on all fours in elephant masks, a shot of Shirley Temple juxtaposed over swastikas, a graphic sex scene involving a man with cerebral palsy, with music composed of Klan racist country songs and tracks by late Church of Satan high priest Anton LaVey as well as Charles Manson. Back in the "real world," the main character visits his other friends, all with Down syndrome, puts snails on their arms and then "burns" them with salt, and the film ends when the boy kills many of his friends by hitting them over the head with a shovel or bricks.

After the film, Glover opened the room to Q & A. I asked the first question. "I have a young son with Down syndrome. Could you please help me understand how you can believe that you did not exploit all the actors with Down syndrome?"

Glover has been showing this film to audiences across the US and he said that this was the first time anyone had asked him that question [during the Q & A; he has been asked about it by film critics and by individuals, but usually the questions center around why he used actors with Down syndrome, not the ethical choice of showing them in that light]. He said that everyone is usually up-in-arms about the killing of live snails. He went on to justify his motives by saying that he wanted to show a world seen from an outsider's perspective and that people with Down syndrome have this perspective. He also said that he had gotten permission to use the mostly non-actors from their "caregivers."

I followed up his response. "If I show an image of George W. Bush followed by an image of an oil well followed by a shot of a dollar bill, then I am making connections by simply creating a visual relationship between the images. When you place an person with Down syndrome in a world of sadistic cruelty to animals, explicit sex, racist sentiments, Nazi symbols and a circus-like atmosphere, isn't it possible that you are creating a relationship between these images?"

He answered that he wasn't making a film about Down syndrome, and that Down syndrome is never addressed in the film, but that he was showing actors with Down syndrome in a positive light, like when he showed the scene of real-life boyfriend and girlfriend in a prolonged kiss followed by simulated fellatio.

Other people began to speak up against the ideas put forth in the film. At least five other articulate viewers (some a bit annoying) asked good questions about the social responsibility of the filmmaker, the flippant or uncreative use of racism and Nazi symbols (which he denied) and the lack of a coherent statement or viewpoint. Glover got more animated by each question, although he kept assuring the audience that he liked the questions. But he also kept reiterating that while he had encountered some angry people in the past, that most times they weren't quite such a hostile audience.

I asked a third question a little later. "You keep saying that you are trying to address the nature of taboos, and the "simple" good versus evil lines that are drawn by most corporately-made films. You want this film to, as you quoted from Nietzsche, go Beyond Good and Evil. Do you think the actors with Down syndrome were able to understand how you were portraying them since it is difficult for many people with mental disabilities to grasp the abstract concepts you are addressing? If they couldn't grasp these concepts, I believe you are responsible for exploiting these people."

By this time, I felt like Glover was getting tired of my questions, but he remained calm, respectful and articulate, if a bit long-winded. He again said that he has been showing this film for over a year and that he wanted to show the people with Down syndrome's perspective and that the New York Times called him an Auteur. He said that he didn't hurt the "actors," that they had fun on the set playing around and that their guardians signed off on the film.

I blurted out, "The guardians were wrong." (I was getting a bit worked up by this point, but I do hate it when I let my emotions take over.)

He shot back, "Maybe, but I stand by the film. The only wrong thing, if there is such a thing, that I did when making this film, is kill the snails. That was wrong. This film is part of a trilogy. In the final film, which I am still writing, and will feature more people with Down syndrome, I think then it will be evident what I am trying to say."

Fade to black.

(All the quotes are summaries that attempt to capture the spirit of the questions. Some of the questions and answers have been condensed. If you want to see the trailer, which features disturbing imagery and nudity, you can see it here. Glover's website, also provocative, is here. I also want to make sure I represent Crispin Glover's reasons for making the film accurately; I believe the best way to engage people and ideas is not to turn them into caricatures. He talked about his film in detail and the reasons why he made it here. To see a short excerpt from his "Big Slide Show," see here.)

Friday, February 01, 2008

Caos Calmo


I am very excited to see that Nanni Moretti's latest film, Caos Calmo (Quiet Chaos), is due to be released. It may take awhile for a subtitled version to make it to market, but I'm thrilled nonetheless. This story is based on Sandro Veronesi's novel about a successful manager who tries to help his 10-year-old daughter cope with her mother's death.

Pollyanna - A followup

Silvi had her first dental checkup this morning. When she came home she was beaming. "No cavities! I got an apple and stickers and a toothbrush and my own dental floss. They put a long straw in my mouth with water in it!"

The last time I went to the dentist it was for a root canal. The dentist told me that I might feel some "pressure" when he struck the nerve. I think my last post on the Pollyanna syndrome caused some "pressure" for a few people.

I got some emails and a phone call. No one got angry, but a few were a little stern. In a good way. The kind of sternness that is forged by worry and love and battling for the right that their child be treated with equal respect.

Thank you for your emails and for calling. Really.

I've been pouting a bit these last few days. I'm not proud of that, especially since I'm supposed to be all grown up now that I'm turning 40 and all. I'm not completely sure why I've been extra sensitive to some of the comments. Part of it is understandable: These last five months have not been easy.

But I think another and more powerful emotion that has been pushed to the foreground is how isolating and lonely our individual journeys as parents raising children with disabilities can be. Sure, we all share the commonality of raising a loved one with Down syndrome, but there are still so many variables that make each experience both the same and extremely unique in the same breath. Some parents have almost no health problems to cope with while others barely make it through the night without worrying if their son or daughter will be there in the morning. Some children have amazing vocabularies while other are struggling just to make a few "simple" signs.

Maybe it's the end of my first naiveté (for surely there are more to come.)

Annie (my wife) enjoys and appreciates the short video highlights of the accomplishments of people with Down syndrome. When she caught the segment about Karen Gaffney's swim across Lake Tahoe, she emailed the link to me at work. Her response is most likely the more "loving" one, which is the standard I aspire to. Mine was to be skeptical.

I was skeptical of the television producers for "exploiting" the story because they know that "feel-good stories" bring good ratings. This view, no doubt, is fueled by my day-to-day experiences working in the business. I was also skeptical that Gaffney's story would change people's opinions of people with Down syndrome. I felt this way for the following reasons.

It seems like the only stories that "they" (the world) deem fit to air about people with Down syndrome is when they accomplish something that people without Down syndrome can also accomplish. And to me this is key: The world says, "People with Down syndrome are valuable because of their accomplishments."

When I watch these stories about the accomplishments of people with disabilities, I keep thinking, "Isn't highlighting these kinds of accomplishments only perpetuating all the misconceptions and reasons why I am fighting for the right for my son to exist? What if Ian doesn't sink a three-pointer or paint a pretty painting? What if - like 70% of people with Down syndrome - he never gets a job or lives on his own or wins a race? Is his life not valuable, meaningful and even beautiful?"

But here's where I really want to be heard. Celebrate these accomplishments.

"But you just said...."

If Ian ever makes a goal in soccer or wins a swimming medal or paints a pretty picture, sure as hell you're going to hear about it - ad nauseam. I'll throw a big party and everyone is invited. And if I was standing on the shores of Lake Tahoe when Karen struggled ashore, I would be right there with everyone else, clapping and cheering her on.

When I lived in Seattle, working toward a Master's degree that would never be, one of the buzz words (or phrases) was "living in tension" or "living with contradiction." When we are living in tension, we can celebrate the accomplishments of those with disabilities and appreciate their worth despite their accomplishments. The problem with the "happy ending" 3-minute story is that these people with disabilities are deemed worthy because of their accomplishments.

When 80 - 90% of pregnancies are ended by a diagnosis of Down syndrome, we need to be challenging these prevailing presuppositions that the only stories worth telling are about people who accomplish things. Because the unspoken message is that the only people worth living are those who accomplish things. My son may never "accomplish" something that the world deems worthy. But every day he teaches me about sacrifice and responsibility and joy.

And about love.