[heather-farley]

I do not have SMA, my granddaughter does.  I joined the SMA Newsletter and forums to try to prepare myself for what to expect as she grows up, and how to support and help her. I am very new to all of this and like most people I can only imagine the difficulties that a person with SMA must face daily. And “imagining it” is nothing like going through it must be, so I really don’t know. But what I do know is people who say dumb things and put their foot in their mouth because they straight up do not know how to handle a situation. I am pretty good at doing that myself, and maybe I am doing it right now. I don’t think they are trying to be passive-aggressive, I think they just don’t know how to handle what they are faced with when they are confronted by the challenges they see you must face every day. They don’t know what to say. They don’t know how to say “wow you are spectacularly strong the way you face your life in a wheelchair every day,” so they make a stupid and insensitive joke. I wish I could give you some great come-back lines that would make it a teachable moment but I am not good with those. Just look at those people and realize that at that moment they feel incredibly “socially awkward” and are putting their big fat foot in their mouth. As they are walking away they are probably thinking, “oh my god, I can’t believe I said such a stupid thing.” Or they are just jerks.