It is as though my life is now divided into three categories: BK (Before Krabbe), DK (During Krabbe), and AJD (After Jud Died). Every picture, every memory, every past conversation is now marked by Krabbe disease and automatically filtered into one of these three mental categories.
If I recognize something is BK (Before Krabbe), I think to myself, “Oh, that was when life was sweet and I didn’t know severe pain. I had no idea how good I had it!” I envy the life I had BK. I stare longingly at photos that are BK and try to remember how everything felt prior to my world being turned upside-down; I had no idea the agony that would strike and was almost oblivious to harsh suffering. In fact, sometimes I even find myself longing for the struggles I had BK because they now seem so insignificant and even ridiculous. I dream of my former life BK.
Each memory that falls within the 5 months DK (During Krabbe) is like a dagger to my soul. I can barely allow myself to consider any of the weeks, hours, or even minutes that occurred DK because the suffering was so severe. I was tormented having to powerlessly watch our beautiful, vibrant, bright boy lose every capacity. I hear Jud’s little voice cry out, “Mommy, I don’t have my balance! Is it daytime or nighttime? My hands are tired! My feet are hurting me!” And then his voice went silent. Then his body shut down. My life DK was torture.
Everything AJD (After Jud Died) is marked by deep sorrow and a fierce longing: longing for Jud, longing for heaven, longing for life without pain. I think to myself, “I wish I could go back to when life felt sweet, when we had two beautiful children and I didn’t have this penetrating, relentless pain.” But instead, living AJD leaves me in a state of limbo…missing what I once had and longing for eternity which I cannot yet have. And unlike any other hardship I’ve experienced, there is no resolution this side of heaven. It feels like a life sentence of heartache.
Naturally, there are beautiful, gracious, and wonderful things that have occurred DK and AJD, but I would give it all up in a second to go back to life BK.