This past Monday we had the pleasure of spending the ENTIRE day at Phoenix Childrens Hospital. Don't get me wrong, that place is amazing, full of amazing people, doctors, educators, patients, and parents....but not what I wanted to do on my Monday or any day for that matter. It was our first official Duchenne Clinic Day, where we see all of our "team" of doctors and complete all of our "standard" tests that help maintain Duchenne, multiplied by two kiddos and a crazy amount of bribes....yes...bribes.
Clearly, you might be jealous of our day, I get it. We are living the dream. But keep reading.
We have gone to so many appointments at this point, I have kind of become a pro. Like not to brag or anything, but I have gotten pretty efficient at packing bags, snacks and things to do, which usually is a complete waste of space in my bag because lets be real honest here...I let my kids play on their freaking IPads majority of the waiting periods. And I am sure we might be killing a few brain cells and suffering from addiction, but hey...whatever works is my current motto. And really, if racing a monster truck on an electronic device is wrong, I just don't even care to be right. Sue me.
Anyways, like I was saying...I have really become kind of a pro at this whole appointment thing...what I dont think I will ever be a pro at...is not feeling heartbroken every single time I hear that MY boys have Duchenne and watching all the things they have to go thru because of it. And constantly being reminded of it when they simply just can not do something because of it (say that five times fast). I am not sure if that will ever get easy. I am sure it will get more "normal" but never will it get easy. And that is hard....living a life that is just not supposed to be this way.
Lately, I have been practicing the art of Bob Marley.
No, I have not taken up recreational smoking...but perhaps I need to. (The option is not completely off my table.) LOL But for now, I am really trying to just let things go, focusing on his key "life verse" "dont worry...cause every little thing is gonna be alright..." And If im not mistaken, Jesus basically says the exact same thing. And as hard as it is not to worry about my kids and their awful diagnosis...I have to just sing this verse to myself to put my mind right. Because, even if I worry...I can not change THIS life. I can not un-diagnose my boys, I can not un-choose to have babies, I can not un-fly my dads plane, I can not UNDO anything. And if I keep trying to undo those things, I am taking away from what I have not yet gotten to do.
Yes I get it, I might sound totally crazy. Perhaps I might be a little crazy..but He left the 99 right?
This past weekend, in a sermon, the pastor said something along the lines of 'stay away from crazy because you cant reason with crazy' and I laughed, because it is slightly true..we all know someone....But then it hit me, I might be THAT someone to someone else...and I realized I would want them to reason with me...or at least try to. I would want them to come after me, I would want them to love me unconditionally and I would want them to help me NOT be SO crazy...right? We would all want that>
and If we are all honest...sometimes we are ALL >THAT< crazy someone. And by not 'reasoning' with crazy, aren't we doing the exact opposite of what Jesus calls us to do? I get it, crazy is hard in general. Whether you are the crazy someone or a 'friend' of the crazy someone...dealing with crazy is not easy. But I think we have made this motto "you cant argue with crazy" to literal. I think we use the excuse "oh, they are just crazy" to brush off our own guilt with not being a better friend or follower of Christ.
And to be honest again, I have experienced this exact behavior by lots of Jesus loving people. And I kinda get it, because Duchenne is crazy. This reality is crazy. What I am dealing with is crazy. It has made me freaking CRAZY!!! BUT it isn't crazy enough, to make it okay for so many people to turn their backs away from us. Its truly a bummer.
So, now I plan to seek out the crazy's and we can start our own crazy train support group...because really, life is hard and it drives us all to crazy sometimes...and if we dont have people reasoning with us...we might just completely loose it. And how good would that be for society? Crazy is just a part of life and we all need to stop using that as an excuse to not be better people. I love to think of THIS life as a calling. God calls us to be who we are, He chooses us to do what we are doing. He never said dont be crazy...He simply said "Dont worry" and from now on, as a follower of Christ, I plan to be crazy about not worrying anymore.