Do you ever feel totally raw?  That's how I feel tonight.  Just splayed open.  With my guts, heart and soul hanging out.  There are times in this fight that I'm so past exhausted.  I've felt so much - the last few days watching Cody have seizures and then suffer the side effects of the valium in his system - that I just want to be numb and not feel anymore for just a bit.  I watch TV to try to zone out...but it's swirling in my mind...is he going to let out that gutteral scream again?  Will he be okay overnight?  Can he go to school tomorrow?  If he doesn't, how will I handle the day trying to manage his seizures and take care of both boys?  Will this ever end?  Will any drug ever work?  Will we ever get any sleep?  Last night we were up at 2:45am with Cody.  He finally went to bed an hour later only to wake up for the day at 4:30am.  He tries so hard to sleep - wants so much to sleep - he just lays there in bed and repositions himself.  He hits his head with his fist out of frustration.  He grabs me and snuggles up tight.  Then he sits up frustrated.  This poor little warrior takes so much.  He endures so much.  He has so many drugs coursing through his body.  He screams with seizures so often.  He tries so hard to work - on communication with pictures, with signs, with motions - despite the fireworks going on in his brain.  Even though he was a totally crazy person today with obsessive fixations, screaming...he still has the wherewithall to walk up to the kitchen and grab the picture for "eat" and hand it to me.  He still signs "open" when he's ready to get out of his high chair.  He still searches for the picture of "beads" to hand to me even though there's a string of his beloved shiny beads laying at his feet.  He doesn't grab them directly because he knows that he needs to "request" them.  I hate that part.  Making him use pictures instead of just giving him what he wants.  But I keep telling myself it's for the greater good.  The more he learns to use pictures the more - one day - it will liberate him.  Someday they'll be his friend instead of just one more thing to do before he can get what he wants.  Someday, even though he can't make sentences with his voice, he will make them with pictures.  I never thought I'd be grateful for that.  For silly little pictures of beads, bananas, swings...yet grateful I am.  For Cody, they are life.  They are the difference between standing there screaming - and simply handing me a picture of "tricycle" so I can lead him outside and see his face light up when he climbs on - knowing he didn't have to scream this time. 

I watch him struggle through these pictures.  I fight and fight for him to progress.  All day long I offer pictures.  I help him "match" a cup to a cup (one of his therapy goals...to put one cup inside another so they are nestled together.)  I help him sign "all done" when he wants to finish a task.  I see him sit down on the little tiny wooden toddler chair in our foyer - looking for me to make sure I see him - because that's my cue that he wants to go outside.  We've made a ritual that every time he's going outside, I sit him in that chair to put his shoes on.  About the 50th time I was about to walk him over to sit in the chair - he walked over and sat all by himself and handed me his shoe.  It may have been one of my proudest moments.  Oh the things I've learned to be grateful for.  Now every day when he wants to go outside and explore or take a car ride - he walks up and sits in that wooden chair.  He'll even go to the coat closet and find my scarf or coat and sit in the chair with it.  He'll look for what he thinks are my keys but it's actually the tv remote - but they are both black so it's the best he can do.  Then when he gets his shoes on he walks to the front door and point to the knob and signs "open."  And my heart overflows with a tidal wave of love, pride and sorrow all at the same time.  My little boy is so fiercly fighting through these seizures, through his brain damage, through the haze of medications - so fiercly fighting to break through and find meaning and order to his little life.  That wooden chair is much more than a wooden chair - it's Cody talking.  It's Cody saying "I want to go outside, please." 

I feel raw.  Watching him simply live -- is gut wrenching.  It is hope, it is pain, it is awe, it is overwhelming.  We pack more into one day than most do in a year, I think.  And tomorrow we'll do it all over again.  I'll fight for his rights at the hospitals and Dr's offices.  I'll fight for his progress at school.  I'll fight his seizures at home.  I'll fight for his development every minute of every day.  I'll battle no sleep, medical bills, school systems, world systems, medical systems, and most of all I'll fight anyone who underestimates him.  This boy needs to talk.  Be it with pictures, signs, or just be sitting in a chair.  And he's doing it.  He's finding a way to do it.  It humbles me to be his mom.

shawna