A Glimer of Realization
(Authors Note: Alpha-1 Antitrypsin Deficiency is a genetic disorder of the liver, which over time can cause damage to the lungs. Each patient with Alpha-1 takes his/her own journey with Alpha-1, but severe emphysema is often an outcome in early adulthood.)
This morning, I shuffled Grace and Meghan out of the bathroom as I was about to use some hair spary on my perpetually unruly moptop of red and gray hair. She complied, but then turned around and said, "How come you can be around hair spray and me and Meghan can't?"
I paused for a second and thought about what to say but before I tell you what I said, I'd like to try to explain my inner panic. You see Grace has always believed that our entire family has Alpha-1 except for her big sister, Kesa. She knows that Kesa has a different mommy, but until today, she thought we all were Alphas...her mom, her dad, and her sister, Meghan.
If someone might have observed our conversation, he/she might not have understood the gravity of our conversation. We used our typical matter-of-fact tones and silly inclinations to talk about it, but there IT was again: Alpha-1. One of my worst fears coming alive...Grace coming to a realization about what Alpha-1 means.
To her, Alpha-1 is just like her lunch box, or her really cool Dora backpack. It is just a part of her life like putting on her socks before her shoes. Don't misunderstand me though. In Grace's short life, she has already experienced two of our Alpha friends who moved onto Heaven. It was confusing to her that Mr. Gary and Ms. Pat weren't going to be at our "Alpha friends" support group meetings anymore. We talked about how we believe that we'll see them again in Heaven when we are very old. (Hey, maybe if I say it enough? It can come true. Peter Pan is coming to mind right now.)
Since Grace is beginning to put 2 and 2 together now, I guess I'm going to have to explain things further. She seems like she is ready, but I just don't want to be the one who has to end her naivety. She is blissfully unaware, and sometimes, I need and want her to stay that way. Heck, I'd love to still be blissfully unaware. Ain't denial grand?
We finished our one minute conversation this way:
Mommy: "Do you remember how I told you that we are all Alphas in our family?"
Grace: "Uh huh, 'cept Kesa."
Mommy: "We'll honey, Mommy doesn't have the same kind of Alpha-1 that you have. Neither does Daddy. That is why I can be around hair spray, but just a little bit. I still need to take care of my lungs too. Meghan and you can't be around it since we need to be really careful with your lungs. Don't worry though. We'll take care of you."
Grace: "Okay, mommy. Meghan lets get away from the "icky" hair spray!"
I closed the bathroom door and opened the window for some fresh air. Having not taken a deep breath during our chat, I needed the air.