Monday, February 04, 2008


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.


Steve said...

The day, or the housr you stop thinking about DS, the day your son looses his greatest advocate.

Steve said...

I guess I should add this is what kind of mood I'm in. I'm preparing for a meeting with Abbey's teachers and therapist tonight. We are looking at making some changes in her current IEP.

Chris said...

Tom, that was my favorite commercial too (and from what I've been hearing--everyone's as well). Guess we've all felt like Charlie Brown at one point in our lives, so we can relate.

Super Bowl was fun. Who doesn't like seeing the underdog win!

Emily said...

Tom, I really appreciate the perspective you offer about how you are dealing with DS. You have such a talent for expressing your thoughts and I can really relate to what you write.

For me one of the major difficulties with dealing with my daughter's DS is just that it is so @#%$ emotionally confusing! One minute I will be inspired by the latest DS accomplishment headline but 10 minutes later I am depressed because I don't want my daughter to be a charity case or a vehicle used to make others feel good about themselves. Oh we are so great because we let the girl with DS on the cheerleading squad, etc. One minute I am enjoying her smile, the next I am upset because the clerk at the grocery store says "that is so retarded".

I to long for the day when DS is not constantly in the forefront of my mind, when I can look at a typical little girl and not feel that twinge of sadness. In 7 months I have come along way, but still have so far to go!

It's so hard to reconcile because the fact is, it hurts like hell and I am not sure how to get around that. But, my baby is so bright eyed and lovely! How can this sweet girl possibly have a mental disability? I am torn between the need to be an advocate and feeling burdened by that role.

I am hoping for both of us that time really will heal.

Carole said...

The Super Bowl was a good watch, although you would have thought it would have been cancelled for lack of interest because the CHICAGO BEARS weren't playing. Happy for Eli but didn't really care for either coach so wasn't emotionally involved except for the treats and snacks at the party.

My favorite commericial was the baby who decided that clowns were surprisingly creepy. I feel like Charlie Brown still lost since he didn't get a Dr Pepper.

Crispin Glover needs to have his skin peeled away and then be salted in my opinion. Since he is human I will just boycott whatever he does, whenever he does it and support peoples' work who are not deedee goder chowder heads.

Tom said...

Steve: Man, my moods swing more often than Bob Knight's do. :) Appreciate the words.

Chris: The commercial would have been perfect if, after drinking the Coke, Charlie Brown could have finally kicked that ball. :)

Emily: I'm so with you on the "charity case" thing. That's really the heart of it, isn't it? The way people treat people with ds is often so patronizing.

When I was asking Crispin Glover my questions, I tried not to come across as a self-righteous jerk and cracked a few jokes but nobody laughed. Now I have to wonder if my jokes were bad (which is entirely possible) or if the audience was treating me "carefully" so I don't break, like I'm a fragile egg or something.

I can't wait for that day, too, when ds falls away into the shadows (if that day ever comes). Everything is "fine" when it's just my family alone; it's when I head out into the world that it all gets screwed up.

And about the advocate thing, Kim helped me be OK with advocating "with my own voice." Some people protest, others make laws, fight for rights, etc. I'm still trying to find my voice. Hope you find yours.

There are so many days when I wish I could live in a bouncy castle... :)

Carole: I think you meant to say Packers... easy mistake.

Remind me never to get on your bad side; if I ever do make a film or write a book, I'll run it past you first. I like my skin.