Ever have one of those days where you feel like you are looking "in" at your life. I picked up our local Alpha-1 support group's new 2007 calendar, and was admiring an absolutely gorgeous picture of Grace. I was looking at her with the eyes that only a mother has. To me, it seems she has a glow around her. It is like her life force is bigger than the boundaries of her body.
All of a sudden, it hit me.
Grace is in the calendar because she has Alpha-1. She has a life threatening genetic disorder, and no matter how much I love her and take care of her needs, I can't take Alpha-1 away. It hurts me to the bone sometimes. I'm sure you are wondering where the hell I've been.
I've been with Grace all along. I don't see Alpha-1 in her. She is my daughter first. Her ability to make my heart swell with love is immense. I think it is so immense that I can actually disconnect myself from her Alpha-1. Yes, my brain knows it is reality, but my heart, a mother's heart, doesn't accept it. It can be summed up in one word: denial.
In case you are wondering, I can do this with my Meghan, too. Her former micropreemie status distracts me enough to keep the nasty A word at bay.
So, I guess I got a face full of reality again. I suppose I'll go back to rebuilding that denial again. It is the only thing that gets me through most days.
Tomorrow is Grace's first day of kindergarten. I get to describe Grace's Alpha-1 to yet another adult who is about to influence Grace's life. I remember my kindergarten teacher like it was yesterday.