If any of my readers follow me on facebook, then you already know that my little boy has to see a neurologist. For the first time in his little life, a doctor has suggested a diagnosis of muscular dystrophy. While it does not come to a total surprise for anyone the knows him, it is still very scary. I had not known that much about it when it was mentioned in the doctors office. So I headed for the information super highway (internet) for more research. What I found could scared the living daylights out of any mother. I found myself glued to the computer screen fearing the worse. Since the MDS diagnosis is actually made up of 100 different types it is hard to know actually what the medical community is thinking. However, the one I looked at the most is commonly in boys, commonly around the age of 5 or 6 (Adam is 7), involves waddle walking, and other things that sound like my little boy. The most horrible thing about this type is that they stop walking by the age of 12 and died by 20. Just typing these words scares the crap out of me. As a mom you want to protect your children, but whatever is going on with Adam I can't stop.
I also found out the MDS is hereditary. This is where the guilt and shame come in. I feel as if it is my fault; either directly or indirectly. It was either my genes, or my choose of a father for him that caused this awful scenario. My dad always told me never to have sex with someone that I would not want as the father of my child because it can happen the first time. I never listened to that. Here I am in the middle of what could be a very scary situation all because I could wait to have sex with the 'right' person. I wish that I would have gotten to know my ex-husbands medical background before I decided to marry him. I now wonder if others should not medical screen potential spouses. If Adam has this condition, then I will not be able to have another biological child. I feel bad enough about Adam, and if I were to have another child after knowing this then I would be making a conscious decision to give another child this horrible condition.
As you can see my mental state is like Hell right now. So I have once more tried to start my meds again. I started yesterday, and prayed that I could have started on a higher dose right away. The idea of being medicated through this ordeal does not seem like such a bad thing. I started yet another steroid for my feet and knees. That one keeps me pretty loopy. I am actually grateful for this feeling. It makes it hard to cry. I don't want Adam to see me cry. I don't want him to know what might come. I don't even know if I want to know what might come.
The only good thing about this, if there is any, is the fact that Adam will no longer slip through the cracks for help. He will get all of the help he needs through many different services, and I can't do it there are other out there willing to help. When he was considered high function disabled everyone thought his condition was not severe enough to give him the best. Now he will get the best. Please pray that God will take care of Adam. I don't know if I can. I just pray that he will watch over him and get him safe.
