Thursday, April 19, 2012

Joy and Rage

Sometimes I am filled with utterly overwhelming joy over the wonderful little chunk of heavenly perfection that is Naomi.  For example, today, about a half hour before it was time to wake her from her afternoon nap, I decided to crawl into her bed with her and snuggle for that last half hour.  This experience was, as it always is, glorious.  She is cozy and warm, and so solidly there.  I find her to be generally intoxicating and am often drunk on my love for her.  Well, during the good times, anyway.  We have a lot of pretty typical 3 year old moments too.  Then there are other times when I am filled with a seething, white hot, atomic rage over what has happened that is so strong that I feel like I may incinerate most of the state of Pennsylvania with my emotional explosion.  Some of the triggers for this are pretty consistent, and I try to avoid them, but other times it just hits me out of nowhere.  I honestly try not to focus on these things.  Most of the time Rob and I both just revel in Naomi's Naominess.  But I can't control unbidden thoughts from popping in to my head, or unbidden waves emotion from crashing over me.  It's just that I HATE Batten's disease. So bad.  It is so stupid.  So utterly, profoundly, endlessly pointless and stupid.  In fact, I hate all of the lysosomal storage diseases.  And all of the diseases like the lysosomal storage diseases.  Hate it.   Hate them.  But I love Naomi, too, and all of her ways, even if many of those very ways that I love are part and parcel of the disease process that is going on in her brain and central nervous system.  That is a hard dichotomy to deal with.  I try to focus on the Joy.  That's what I was doing today around 5pm.  But sometimes the Rage is here too, like today around 7pm.  It's just the way it is.

Naomi all ready for school on Tuesday.


  1. That expression on her beautiful face is a carbon copy of someone else I know--her Mother!!!LOL In fact I could find a few taken many years ago.