Yesterday I was asked...."is there anything you won't blog about?" I am not thinking that was necessarily said as a compliment. The truth however is.....yes and no! Come on...would you expect any other answer from me? Honestly....most things that come to mind, that aren't hurtful to others, aren't gossipy, and aren't dishonest......I will blog about. As you can probably tell....I am pretty forth coming with my life. Perhaps I feel that maybe there are lessons to be learned from my experience, but more than likely.....I blog about things as a release.....and you all are just taken along for the ride. However...there are things in my life that I won't.....don't.....can't blog about. Why? Probably because I haven't fully processed them yet. I am big on avoidance.....why write today about what can still be avoided tomorrow? Believe me.....if it weren't for avoidance.....I would be blogging ten times a day (now though....it just seems like I do!) Count your blessings that I am big on avoidance!
Zachary just called and he didn't get a part in the spring play. I was crushed. He on the other hand was fine with it and said I will just try and get on as part of the crew. He is obviously more mature than I....but I will write a blog about anyone who tells him I said that! Actually though....I am pretty proud that he is taking it so well....especially when I know he wanted to be able to act in every play during his high school years. Guess God has another plan right now!
Day 06 - A picture of a person you'd love to trade places with for a day.
I would love to know how he feels about things. I want to know how he feels before, during and after a seizure.....so that I can better identify them when they come and know better how to take care of him to make him comfortable in the process.
I also would like to know what he endures during a shunt malfunction. How his body reacts....and again how it makes him feel or if there is anything I am missing to take care of him and them in a more timely manner.
Finally.....I would just love to know what goes on in his mind on a daily basis. Although he communicates (in my opinion) quite well....I am sure because he is non-verbal, there are things that we just don't get. I am sure there are times when he wants us to know something and we either put our own interpretation on it....or miss the boat altogether. He either has to act out....or just patiently resign himself to the fact that we are simply never going to understand. I want to know what he truly likes, dislikes, and what he simply tolerates. I want to know if he is ever in pain and just masks it behind his laughter.....or if maybe he has had pain everyday of his life to the point that he no longer recognizes it as such.
I want to know how he feels about his environment and those around him. Does he truly like everyone or again.....does he just tolerate because that is what he has learned to do?! Who does he feel closest to? Most comfortable with? What foods does he really like? What toys? What shows (not including Spongebob?)
Thinking about all of this makes me realize that the little guy I think I know.....I may not really know at all. I may assume so much about his life.....because he is unable to correct those assumptions. It kind of makes me sad!
I saw a big bill board in Wichita the other day which said LET'S FIND A CURE FOR CEREBRAL PALSY! I had never seen one like it before. I had to stop and think how great that would be to be able to actually carry on a verbal conversation with my son or to watch him run across the front yard without braces or a walker. How exciting that would be?!