In my previous post, I mentioned the fact that blog posts will be "hit or miss" for the next couple of months. . . until we get through Buddy Walk. I will honestly do my best to blog on a regular basis. I wish it could be every day -- but it's just not going to happen. So, I'll give a brief weekend update (not the SNL kind) and a look ahead to the coming week. It's gonna be a doozy!
This past week was Edison's first week of school. And, like you might imagine, he survived. He somehow managed to get to school on time each day -- despite oversleeping one day. His uniform choices (khaki shorts/blue shirt . . or blue shorts/white shirt) were surprising. You see, in the past, he has almost exclusively worn the khaki/blue combination, and left the white shirts to (literally) rot in his closet. This week, I believe I saw two, not just one, but TWO white shirts head out the door. (I'm still in bed when he leaves -- Mark gets him out the door, then I get up for round #2)
However, all those bets will be off this week, because Caroline starts school on Thursday. Mark went to her orientation on Thursday night -- and really liked
the new teacher. She has a son with autism, so her ability to identify with us as parents of a child with special needs will be a huge blessing this year. We're looking forward to really great things.
At this point, we don't know when Caroline's bus will arrive -- but with school starting at 8:30 a.m., and it being 20 miles away -- I'm guessing we'll be walking her to the bus at 7:30 a.m. (sigh . . and yes, it will be ME, because Mark will be taking Edison to school by then)
When her school starts, she will go five days each week -- four to school, and one to her Parent's Day Out program. This will be her last year for both of these programs. Next year it's time for KINDERGARTEN. (I'm still in denial on this one)
So, I'm looking forward to the end of this week, which sounds bad. But, it has become difficult to "manage" the two sides of my life (home & work. . not to mention DSAG/Buddy Walk) with kids at home. Once we get back in that school routine, I really think things will settle down some. Now, don't get me wrong--they will still be busy--but there will be a regularity that will be comforting.
On Thursday, Mark and I are traveling over to Bristol, TN for NASCAR weekend. No, we do NOT have tickets for either of the races, but we are working in a concession booth (like last year) to raise money for DSAG. It's probably one of the most tiring events we do, but it is totally worth it. This year, in addition to our four friends who went last year, we are bringing about six or seven other people from church to help out. The cool part? During qualifying and practice, you get to sneak up into the stands and watch your favorite drivers. It's amazing.
Me? A favorite driver? Well, I guess I do have one. . . . and, I'm looking forward to seeing that bright orange AT&T car. He won the spring race at Bristol -- and I'll go absolutely berserk if he wins the fall race, too. We'll see. But, Thursday night, it's all about training and inventory in our booth. We'll also get to spy out some of the drivers practicing. I'm looking forward to that. . . and to taking lots of pictures along the way.
Sunday will be good -- I've taken the day "off" and am turning the worship leadership over to a young man from Johnson Bible College. He's a great worship leader -- and he's going to work with my exisiting band. I'm excited to see what they come up with for Sunday.
Other than that, we *think* Edison has a game on Tuesday night. . .we're not sure. (Yeah, private Christian schools are TOTALLY the way to go -- sometimes!) And, of course, there are many Buddy Walk "activities" on my to-do list for the week.
And, if I may. . .let me give you something to think about:
For the last week or so, there has been a lot of talk (picketing/boycotting) about the new movie "Tropic Thunder" starring Ben Stiller. In this movie, the "R" word is used not only repeatedly, but PURPOSELY. There is a story within the story about an actor who portrays a developmentally disabled young man -- to the point where they show movie posters and clips (or so we've been told) within the context of the movie.
The characters within the movie (while liberally using the R word) go so far as to say something like, ". . .now you've gone full retard. . ." or something equally appalling. And, when approached by many concerned individuals representing developmentally challenged people, the actors, the studio, the advertisers. . . EVERYONE took the stance of: "It's not real
because it's what a character is portraying in the movie. . ." and refused to change anything. They even have started printing T-shirts with the phrase "Going Full Retard" on them. Yeah, it's a great time to be alive.
Okay -- so here's where I'm at with this.
In the same way that evil will never completely be conquered until Jesus returns, some of this struggle is never going to end. Years ago, the "n" word became nearly illegal to say. (Let's face it, a man got away with two murders because of the word)
I cannot imagine this, but I remember saying (or hearing) that word when I was growing up. I think when I first said it, it was purely innocent, because I'd heard it at school. But, if I'm not mistaken, my parents quickly and efficiently
taught me that such words were not ever to be spoken. And, it stopped.
Unfortunately, it is seen as funny, or has been accepted as "colloquial" to say the word "retarded," or "retard," in casual, everyday conversation. And, to someone who studies language, it does
mean slow. In music, the terms "ritardando" or "ritard." mean to slow down. But, to use the term as a way of teasing or poking fun at someone -- regardless of whether they have a delay or not -- is unspeakably offensive to me and to my daughter.
Am I going to be able to stop it? Probably not.
Will my boycotting the movie make any difference? Nope.
Could I have picketed the movie? Sure. But, I didn't.
I guess it's got something to do with the way I was created. I want people to stop using that word. I really do. But, for me, sharing my heart in small groups, or one-on-one seems to be the best way for me to stem the tide against the "r" word.
I remember one of my college professors saying to me that some of the best teachers aren't necessarily the "A" students. Most "A" students get the answers right without really having to know why. But, a teacher who was a "B" or "C" student had to work at the "how's and why's" before they could master something. I was a "B" student, mostly. My approach has always been to share and explain when trying to teach or retrain someone.
Look at it this way. . .
Caroline's Trisomy-21 diagnosis is just that--a diagnosis, not a definition. It's part of her overall genetic structure. This structure was designed by a Master Creator. He knew, long before time began, that there would be a Caroline. He knew that she would be wonderful. He knew that she would be delightful. He knew that she would captivate hearts the minute someone meets her. He also knew that she would have an extra 21st chromosome. He knew that this would affect every cell in her body -- including those that govern her mental and physical development.
He knew that she would be labeled as mentally retarded. And yet, he lovingly created her anyway.
And, for some reason that still escapes me at times. . . he decided that I was worthy to be her mommy.
I don't know why. I feel so inadequate at times. But, I'm not mad, or disappointed.
Oh, there are days when I get sad. There are times when I realize that her peer group is developing faster than she is -- and that eventually, she will be left behind by some of the kids she considers her 'friends' now. And that literally breaks my heart.
But God provides. I know now -- in the same way that I pray for Edison's wife -- God is preparing 1 or 2 very special friends for Caroline. These are friends that she may know now; or she may not know them. I know that they will be people who will accept her despite her delays, and they will cherish her and befriend her so that she won't be lonely. They may have Down syndrome, too. They may not. Like I said, I don't know who they are at this time -- but I pray for them.
Caroline offers absolute, unconditional love and acceptance. And I pray that it will be offered back to her. We get looks when we walk through the grocery store -- but just as often, I get asked where she is if I go shopping alone. Sometimes people give me a "oh, you poor thing" look when they see us out in public -- and I swear, God seems to always give me an opportunity to either laugh with Caroline, or hear her say something totally amazing (with amazing clarity) just to prove that it's not a pitiful situation.
Caroline's got big things in front of her -- diagnosis or not. She's got amazing potential. She's got a sense of humor. . . a halfway decent sense of rhythm. . . and an appreciation for music that absolutely fills my heart with joy.
. . . and if I could, that
is why I would ask Ben Stiller not to use that word in his movie. Or make T-shirts with that phrase on it. I really am offended by the blatant use of the word "retarded" in society -- but more than that offense, I am heartbroken that the world is given such a limited view of kids and adults like Caroline . . and Henry. . .and Jenni. . .and Morgan. . .and Anthony. . .and Lexi.
Because, until they know a Caroline, they just won't get it. Yeah, that's what I'd say . . .but I could never get all of that on a picket sign.