SMA AWARENESS 2016 - Day 4

It's Day #4 of SMA Awareness month. And you know what? I don't want to talk about it. So there's your awareness/info for today. There are times I just don't want to talk about it. SMA is all consuming. Taking care of an SMA Type I child is very physically and mentally hard at times. I've learned it doesn't matter if you have nursing or not. They can HELP care for Colby. And certainly I need a medical professional here to care for Colby if I need to work, go to the doctor, grocery or out with friends. But ultimately Colby is MY responsibility. No matter what. I handle nurse scheduling. I handle ordering equipment, supplies, prescriptions, supplements, everything kiddo needs. I schedule his therapy appointments and attend these so I can make sure I know best how to help Colby. I take him to his doctor appointments. I make sure he gets what he needs when he needs it. Or rather, I really try. Sometimes it's a bit beyond my control. Others are here to help me, but it in the end, 100% of Colby getting what he needs and staying healthy is up to me. And that's fine. That's exactly how I want it. But SMA is very complex and there are so many things that need to be done for Colby. Tonight I would just like to spaz out a bit. Not think about or talk about the statistics, or the realities, or anything else related to SMA. I'm reminded of it all day, every day as it is. I want to get off this computer, get ready for bed and try to relax a bit. Let SMA drift to the back of my brain instead of front and center, if only for a few hours. Good night.