I feel like sometimes people are a little afraid of me. I've had people comment that they shouldn't even talk about their crazy day because its probably nothing compared to mine. We all have our own crazy. People either don't want to talk about CF because they don't understand, or because they're afraid they have to hop on an emotional roller coaster named Erin if they bring it up on the wrong day. I don't always want to talk about it. I deal with it every day, some days better than others. Some days I don't mind when people ask me questions about it and about things. So few people really understand and I get frustrated because I feel like they haven't taken the time to understand. Other friends have distanced themselves. They have no clue what goes on. I don't know why they've left us, but they have and I've become okay with it. I use to get mad when people didn't "get it", but with time I've come to realize that its not their life to get, its mine. As friends, I thought that they would share this with us, but whether they are scared or confused or simply don't understand our situation, they have chosen distance as their mechanism, and I'm okay with that. I've got who I need in my life.
I think that mostly I've settled into our life the way that it is. I only get worked up when I hear a sad story or hear bad news or just have a bad day...just like the rest of us. I do have lots and lots of hope, but it doesn't mean I'm not scared sometimes. I'm not naive to what this disease can and will do to a person, but I'm optimistic. The perspective that the woman who wrote "Notes From a Dragon Mom" provided in her article was emotional, eye opening and inspiring. This is what I felt I shared with her, as the mom of a kid with a disease with no cure:
"Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."
Different from the author, I have not abandoned the future. I am hopeful for Drew. I'm just a mom who is truly, madly and deeply in love with my son who fights a disease for which there is no cure every day. But I'm hopeful. That's why I fight for him. I'm hopeful.