One question I get constantly from strangers, and people who are just getting to know me is how are you so happy? Truth is, I’m not always. In fact, there are many days when I’m anything but. However, I’m able to survive these days and come out the other side better for them. I survive because of my faith, my family, my chosen family, music, singing, and being able to put my thoughts on paper.
From the time I understood I was different, my family never allowed me to wallow in self-pity because they NEVER treated me any different than a “normal” child. I still had to clean my room, go to school, do my homework, be polite, and respect other people. You may think why is that important? It’s important because many families that include children with conditions, such as mine, aren’t treated like that at all.
They are treated as fragile human beings who cannot contribute to the world. That said, are there things I physically cannot do because of my condition? Absolutely. I’m not going list them here, ever, because that’s really not the point. The point is there are far more things I can do then things I cannot. My family focused on those instead of the latter, and still does.
I don’t know if anybody, outside of my family, knows this or not ,until now; but I wasn’t supposed to be able to talk given my involvement. Every time I remember that fact I am humbled beyond belief. That said, it has been used against me from time to time as a not so subtle reminder that if I can talk I can do __________.
My parents, from the very first time I set foot in a school, fought for me to be treated like every other kid. When I entered kindergarten it was suggested that I be kept in a special class for “kids like me” for part of the day until those in charge determined I could handle a full-time, “regular” classroom environment. My mom told them a resounding NO using the “she wasn’t supposed to talk, but as you can clearly see and hear she does” argument. Thank God (literally) she did because it brought me to my partner in crime, and very fist chosen brother a year later.
On the playground I was always self-conscious around, and slightly envious, of the other kids. He realized that and one day came over to me with a basketball. I said, “You know I can’t play.” The only I response I got, with a glint in his eye, “Yes, you can, and I’m going to teach you.” After much grumbling on my part, I gave in. For the next few weeks, we spent every recess with a ball. I happily report that I can, indeed, play. It may not be a game approved by the NBA, but none the less it is “Stacey’s version”. Every time I think I can’t do something, I’m reminded, by my chosen family, it’s just another instance that requires figuring out how to “play ball.”
I’ve come to the conclusion that life is really about just making the choice to live in such a way that can’t becomes can, and obstacles/challenges become possibility. We have a choice to deal with our circumstances with despair or hope. I choose hope. I choose to not settle for known limits. I choose to believe that the world is full of good, and that I can contribute to it in a way that allows it to continue to be good. Is it tough? Absolutely. However, so am I and so is together.