Hello there! My name is Missy, but my online username for many many years has been TerrorMom. The story behind it is actually pretty sweet, if you ask me. We called our twenty year old son Tiny Terror when he was little. Once our fifteen year old came around and we figured out that the little darling was fearless, he became The Terror. I’m sure moms of boys will perfectly understand. I’m not ashamed of my username, obviously, but it is difficult to give my email address out to the pastor.
I’ve been married 27 years to the love of my life. We have our ups and downs like any other couple out there. Neither of us strive for perfection because we are perfectly flawed. He gave me the two most perfect gifts in the world, my heart and soul: Twenty year old Jamey, and my sixteen year old Ed. When I say perfect, I do not in any way shape or form mean perfect angels. I’m raising boys to be young men, heck one of them is a young man. Just like my husband and I, they are perfectly flawed.
The purpose of this blog is a rough one. Five years ago, Jamey was diagnosed with Fatty Liver Disease (NAFLD) a year or so later, we learned that it was actually the more advanced state of NASH. Last February, we were told that he had early cirrhosis. He also has a chronic pain condition, assumed to be in his liver and bile ducts, called Complex Regional Pain Syndrome Type 1. CRPS for short. We still have many questions, and it’s been an extremely frustrating and scary ride. I’m trying to save my sons life, but I also want to make things easier on other Medical parents. We knew barely anything before we were thrown head first into the world of Chronic Illness. If I can ease that burden and that fright for even one other family, I’ve fulfilled a purpose in this world.
Obviously, having a child with chronic issues is stressful. I also use the blog to vent and as a way to keep something of myself. It’s so easy to loose yourself in whats going on. In order to be my best, I need to keep hold of whatever sanity I have left. And lets face it, at times, it’s not much there to work with. I gave up my job when the headaches caused him to be dizzy and the multiple hospitalizations made getting to work impossible. And in turn, our financial situation plummeted. We are now a middle class statistic.
I don’t hold back, and I tend to over share. But I do believe I am a good person. I’m holding on for the ride and you’re welcome to follow along. Together we can learn about these issues and raise awareness. Awareness might lead to a cure. A cure will give my boy a chance at the life he deserves.