I haven't really been able to find the words that adequately describe all the feelings, thoughts, and everything I have been experiencing the last few months. I suspect that I never will, but I will keep trying because I know that sharing helps. It's easier for me right now to look at this from a more indirect perspective. There is so much support in the MDA and DMD community, but I am simply not ready to jump in there.

So I found these and they are helpful in describing what this is like and what you can do to support my boy, our family, and me - because so many have asked and offered help. These are tough, but important reads (especially What's Really Wrong), so you may want to sit down. 

From Mother: One Mother on her daughter's Limb Reduction Complex diagnosis
From This Little Miggy Stayed Home: What's Really Wrong
From This Little Miggy Stayed Home: School and Navigating a Special Needs Encounter +  Navigating a Special Needs Encounter