I hate SMA. That should go without saying, but I wanted to say it. When Nicholas was given a "preliminary" (!) diagnosis of SMA, Corrie was the one who researched it. I looked on a webpage or two, but didn't go very deep. I didn't want to know.I still don't want to know.
I have not entered into the community of SMA. I have not raised funds for SMA research, I do not follow SMA blogs, and know just 2 families who have experienced the loss of a child to SMA, and only because they live in Winnipeg as well and were introduced to me through mutual friends. I recognize that this is out of avoidance, and that it has been a coping mechanism. I also recognize that it is not healthy.
I get angry when I think about SMA. Once, when we were watching Extreme Makeover: Home Edition they profiled a family who had two children living with SMA. I got so angry and upset I couldn't watch. I can relate to families whose children have passed away, but am riddled with guilt when faced with families who care for their SMA children 24/7, incredulous that Type I cases can live past 2 years old. Wondering if we could have managed it. Exhausted by their limitless energy to not only provide nonstop intensive care for very frail children, but to raise funds for SMA research as well.
So, needless to say, thanks to my new friend Kristen, I discover 2 1/2 years after being introduced to SMA that SMA awareness not only has a month, but a ribbon too. Ivory, to represent the innocence and purity of this horrible disease's victims.
The problem is, I don't want to be aware. I don't even want to acknowledge that this stupid disease even exists. And I don't know what to do with that.
What I am grateful for are the many who labor tirelessly for SMA awareness, who raise funds for SMA research, who don't let us forget that it can happen to anyone, anytime, anywhere, and that it must be stopped. For those precious people, and for my precious babies, I will wear the ribbon. I will be aware.
