The unwelcome visitor that never leaves

It has taken a devastating toll on many boys and men for years and years. Lord knows it's done a number within my family and my life for years now. You don't hear much about it, it's not a disease that is really well known. I mean let's face it, Aids, Cancer, ALS, Leukemia, these are all well known diseases but Duchenne, no it's not. I know there are a lot of diseases out there that are not as well known also but I am only talking about this one, this disease that ravages my son's body and mine.

This disease that has ravaged my family, my mother, my grandmother, my uncles and my brother. It's like an unwelcomed visitor that never leaves, the horrible smell that still lingers year after year, the one thing that makes it hard to believe in much. Believe me I know, I am aware. I spent years cursing God for what happened in my life, why he had cursed my family to deal with this disease, why my brother and why not me! Why not me, I who was older, stronger, willing to take all that came to ease my brother's pain.
Why why why? I spent years not believing, even though my mother still did and does. She tried, I know she suffered more than I have so it was very interesting to me that she did believe in God. Her older and younger brothers both had DMD, they both died in their very early 20s. I know she thought of this often with her son, she wasn't sure she would be able to be strong enough to make it through with a child suffering from the same disease that took her brothers.
She did, she managed when she thought she couldn't because she had her family, well let's be honest, she had her sister and me. Her mother died before Tom did as did my grandfather. One of my father's sisters tried to help and be there for her when she could, but it was difficult I'm sure. But I am not going to go into that other than to say that my father wasn't around and most of his family was not either. I'm sure it was difficult with my mother being their ex sister in law and all. (I still have bitterness here so this is where that part of this story stops.)
Then there is me, when I was 20 I found out I was pregnant. At first I was freaking out, how would I be able to raise a child if it were a boy and had DMD? Was I going to be strong enough to do it, could I do it? How would people look at me knowing that this ran in my family and how big of a chance I was taking by having a child? Then I woke the fuck up and realized that it didn't matter to me how anyone viewed me because their opinion didn't matter.
It was hard once I found out that I was indeed having a boy. I knew deep in my heart of hearts that he had it but denial is a lovely place to be for 7 months. I knew that I would probably defend my reasons for having my son once he got older but I had no idea that my own grandmother would tell me at my baby shower that I was stupid for having a baby knowing the risk I took. Once he was 9 months old and it was confirmed it was worse with the people that knew it ran in my family.
After my brother died I was told not to depend on my family, (my father's side), that I knew what I was getting into when I had Zak and I couldn't expect any support from them. Which I didn't need then and I really don't need now. I will not defend the reason that I had my son and I shouldn't have to. Have you? Did you ever have to defend the reason you had your child? Have you had to explain to people that yes, you knew there was a chance and yes you had them anyway?
I have been through hell with Zak, the hell he's been through in the past few years has been tough. I've always worried that he would grow to hate me, knowing that this disease is carried in my genes, but he doesn't. I asked him about it a few times and he keeps telling me no. He said he couldn't hate me because I gave him life, and because he knows that I would take his place in a heartbeat if I could. But I can't, the only thing I can do is make his life as good as it can be.
There have been several mothers that have lost their sons in this past year and it weighs on my mind. I know that I have been blessed for Zak to have been in my life as long as he has and that I have no control over how long he'll be with me.
As the mother of a boy that has this disease though I believe that it's my job to let you know how it is when you have a child like mine. I felt the need to share this part of our life with you tonight to show you of what it is like to be on this end of a disease like this. It is hard but possible and you can expect many more blogs of how it's going. After all, you'd never know if you didn't hear it from someone who lives it.