Go Fly A Kite

Today was a good day at the Cumby house. Duncan completed his second grade music program without incident. He had a very minor part, as did all the children. He did fine. It was wonderful and inspiring.

For you to understand that though, you would have had to have been at the first grade music program last year and later in our home for several hours into the night. It was, maybe, the worst day of my life. I am certain it was worse than that for Duncan.

Over Duncan's life I have been asked many questions, most of them have been stupid. They have been, I am not one to sugar coat. One of the dumbest, I carry with me in mind and recall it often- "Have you given any thought to what the future holds for Duncan?" The answer? I find little time to think of anything else.

How could I have NOT thought of his future? Equipment, accessibility, aides, communication devices, computers, therapists, grab bars, wheelchairs, and the list goes on and on and on. The logistics of accomplishing all that he wants to accomplish can be mind-boggling. But his Daddy and I are so unbelievabley proud of what he wants to do that we busy ourselves with figuring out the how.

And there it is- the major flaw- we busy ourselves. Oh yeah, I'll talk accessibility and ADA with you all day long. I'll go to ARD meetings and make phone calls and fight the good fight. But there is no way in hell that I will let my mind wander into those dark places where I have to think about the negative things that he will endure.

So, last year at the first grade music program I got smacked between the eyes with it. Duncan refused to go on stage, crying and throwing a big tantrum. Casey had to take him out of the auditorium and unfortunately, Caroline and I were trapped in the middle of an aisle and we were forced to sit through the entire program wondering what had happened. It was awful. What happened next was ten times worse.

As soon as the program ended we went directly to our car, which is a major feat here in HillBillyVille seeing as how you basically "know" everyone else in the whole auditorium. We drove home on silence and eventually I speak to Duncan on the couch about what had happened.

He said he didn't want to perform because he was "ugly". And not like all the other kids. Essentially, my six year old explained to me that he had no desire to be a side show circus freak for everyone to put on display. And that was exactly how he felt when he got on that stage.

We had many talks about this years program and I gave him my full and complete blessing if he chose to not participate. Singing songs about the weather and holding a cardboard kite are not big accomplishments for a kid like Duncan. However, standing up and being proud of who you are and not worrying about what everyone else around you thinks.... Well, that's pretty big stuff in my book.