To Taste. Becoming.

It’s happening.  September 3rd 2005 (the day of my son’s brain injury) keeps happening every day.   Kernicterus keeps coming for us.  Somedays it rushes and somedays it just rolls softly.  Today was a gut punch.  In plain black and white, it was more than clear – another swallow study fail.  Food just keeps slipping down the wrong pipe.


Last time this happened it seemed temporary and fixable.  Today we went in hoping and praying that things were better, that we’d regained ground, healed up.  But these past few months, when it came time to eat, I always wanted to hide.  I felt like the worst mom ever.  I didn’t want to feed my son.  The panic inside of me was paralyzing.  Now I know why – mommy sense – all wasn’t well.

I fell into deep sobs tonight as we sang “It is well with my soul.”  All is not well.  This is not well.  And yet the song rings true.  It’s not well in my body.  It’s not well in his body.  And it’s not even about currently being well in my soul.  It’s becoming well in my soul.  As I sing, as I say the words, it is becoming well in my soul.  I am becoming.

We grieve as our boy looses another ability / a central human experience, another barricade built around him, and we maybe sneak our food and abandon family dinner times for a while as we reconfigure…and we pray.

And we’ve been praying, and today God answered.  He said, “No, not this time.”  He didn’t forget.  He didn’t abandon.  He said, “This is isn’t what you wanted and yes it hurts like hell – but it’s for a good reason – a reason I won’t fully reveal on this side of eternity.  Trust. Be still. Rejoice.  I love you.  I love your boy.  You are becoming.  In this, in Kernicterus, you are becoming.”

5 thoughts on “To Taste. Becoming.

  1. Oh Miriam, even though I only know you from afar, I have been following your story and praying for Blue for several years now. I am weeping with/for you as I read this. I don’t know kernicterus personally, but I know grief and loss very well, and I know how to weep and pray. I am sorry. And I appreciate you taking the time to share.
    Annie P

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