Yesterday, I attended another Alpha-1 education day in Chicago. I always look forward to attending the days. I think that is because I keep hoping that one of these events will reveal that latest advance, the "ah ha" moment for some doctor who might be there, or possibly that glimer of hope for my beautiful Alpha daughters.
As is usually the case, I was sorely disappointed.
I know that I'm really quite lucky to have Alpha girls who are doing well. They are growing and learning about all the subtle nuances in life. I get to love, cherish, and hold them every day, and I always try to remember that there are parents of children with Alpha-1 who can't do that. Their precious children earned angel wings.
So some people might say that I'm torturing myself by attending these events. Some people might say that I'm wasting my time. Sometimes I wonder the same thing, but what those nay sayers don't know is what keeps me coming back.
Everyone in that room understands how important it is to find a cure for Alpha-1. Everyone knows how it feels. Everyone has felt the guilt of Alpha-1...the guilt of placing a burden on loved ones...the guilt of passing on a life threatening gene...the guilt of being less than perfect.
What makes these education days perfect is that we are all less than perfect in the room. We are all part of the Alpha-1 community. We all know how it feels. We all know that a cure must be found. My babies lives depend on it.
Long live the Alphas! Nay sayers be damned!