I can only imagine that when you have a child that has Down’s syndrome, Batten disease, or many of the other disorders that affect both mind and body, that you do what you have to do. Of course, it would be a very intensive labor of love to help them and keep them thriving. I imagine that people would think that you were awesome because of all of your efforts, and you are awesome, but you are also only doing what needs to be done.

Well, what do you do when you have a disorder like childhood or teen-onset myotonic dystrophy where your children look normal except for some male pattern baldness and muscle wasting? As far as everything that you read, it is a muscle disease.

I can tell you from my experience that the mental/cognitive effects are as devastating as the physical effects (and the physical effects are extensive from swallowing, pneumonia, weak hand movement, unstable walking, to the heart quitting). The point that I am trying to make is that many people compliment me and tell me what a wonderful mother I am. The reason that I share my experiences isn’t to brag about myself, I am trying to make a point that those with myotonic dystrophy are affected in both body muscles and their mind. So, I am only doing what needs to be done.

Because myotonic individuals look almost normal, most of us don’t realize the effects on their mind, including us parents. I may sound like a broken record about what I do but hopefully as I become a more skilled writer, I will be able to make the point that I do what I do because my family would not only cease to thrive, they would probably not be alive if I didn’t adapt my life in whatever ways are necessary to be there for my family.