Judson's Legacy

Three Categories


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.

4 Responses to "Three Categories"

  1. Jean and Gary Butler says:

    Somewhat I know how you feel…..except my three categories are BD (before divorce); DD (during divorce); AD (after divorce). Life is so hard.
    I love you my friend~
    Jean (and Gary)

  2. Rebekah says:

    This is such a powerful description that it makes me feel immediately connected to what you are saying. Even without having lived through your circumstances, I feel as though you have wiped some of the grime away from a window and I can more clearly see inside to see how you perceive life.

    I’ve heard that sympathy is a reaction to a problem in someone else’s life that you haven’t personally experienced, whereas empathy is a reaction based on your personal shared experience. Your post speaks so deeply and clearly to me that I feel as though I’m experiencing empathy instead of sympathy.

    In a way, my life could be divided into pre-Judson and AJD as well. He made a mark on my life that will forever change my perspective…

    I want BK for you. I want Judson back. I want you to need your double stroller again. I want you to chatter with two kids over dinner instead of one. I want you to be able to look forward to future plans with joy and anticipation instead of being overshadowed by constant and continuing loss.

    And yet there is no resolution. I ache for you.

    How good there is that we can trust in Christ and know that there WILL be resolution. It must seem like that time is forever away… like each day is another lifetime of pain… but our Resolution and Answer and Hope and Healing will be found in Christ that day.

    I am looking forward to that day for you, my sister, even more than I long for it myself.

    World history is marked by Jesus’ lifetime on earth… BC and AD. And YOUR history (in a way, OUR history, for those of us who walk with you), in all its divisions, will be triumphantly resolved and healed in the moment that you are reunited with Judson… whole and vibrant again… in the presence of the One who does have all the answers. He’ll wipe all the tears from our eyes.

    And then AJD will end forever- and you will never lose Judson again. I want that for you.

  3. Catherine Fenton says:


    I am so with you on this post…

    lots of love


  4. Nicole Morris says:

    So true.

    Right now I’m stuck at, "Last year at this time . . . we were an obliviously happy family." Grey was 4 1/2 months old and rolling over.

    On Tuesday, I’ll be facing the Senate trying to convince them to pass "Greyson’s Law". And Texas is so far behind, we can’t even ask to screen for Krabbes yet!

    I’m really trying not to be angry. As I see how receptive people are towards the law, and my family, it helps me to believe that Grey really did just have an 11 month job, and I was chosen to be his mom to create his legacy to save thousands of babies. I’ll keep telling myself that.

    Counting the days to the Symposium. Bill and I will be coming without the kids, whoo hoo!

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