Sometimes, my overwhelming desire to believe that my children will be okay runs my life very effectively. I go through the normal day-to-day experiences of raising my girls without much thought for Alpha-1. Yes, I know that they have a life threatening gene. Yes, I know that right now, things are really great for them. Yes, I know I'm lucky to have my children with me to hug and hold. I guess what I'm trying to say is that most days, I have sort of a robotic response to thinking, feeling, or talking about Alpha-1. It is like I'm on autopilot.
I can rotely tell anyone about Alpha-1...what it is, why it affects my children, what we can and cannot do about it. I even devote volunteer time to Alpha-1 by serving on the board of directors of the Alpha-1 Association, Alpha-1 Kids, and the Alpha Pack, Wisconsin's support group. Monthly, I write a newsletter for Wisconsin Alphas, and daily, I monitor an online bulletin board for Alphas. I answer questions, provide support, and remind people in the Alpha-1 community that they are not alone.
Yet, here I am alone inside my own head tonight dealing with today's breakdown of powerful denial that protects this mother's heart.
In my last blog entry I described having interviewed an Alpha-1 researcher, Dr. Ronald Sokol. He is going to head up a groundbreaking research study of children with Alpha-1. All week, I've been thinking about how excited I am about this study, but here and there, a subtle realization kept creeping in my head. This study really is about my daughters and their genetic disorder. My babies have Alpha-1, and today, that is overwhelming the hell out of me.
This mom is about to order up a good dose of autopilot again.