happy being trevy

It never ceases to astonish me that people, even knowing Trevor literally had half of his brain removed, cannot wrap their minds around the idea that there is not a single part of his being which has not been affected by both this surgery and the saturating seizures he suffered before. Let me repeat, there is NOT a single part of his being that was left unaffected by his disability and the treatments we've been forced to pursue for his sake and quality of life. NOT a single part. These thoughts have been brewing in my heart as I've observed people working (formally and informally) with Trevor attribute a variety of his challenges to behavior or lack of "listening" or silliness or defiance. When in fact, it's more often than not linked to a very physical (though unseeable) limitation which has nothing whatsoever to do with behavior. And even his behavior (which is challenging) is linked directly to his disability. Because I ...

 So, confession. We don't do anything like a boss around here. We're not that cool. Also, I don’t typically write advice posts.  I suppose that’s because I consider myself more learner - less teacher.  Or maybe it’s just that know-it-all types drive me wonky?  At any rate, after surviving yet another inpatient EEG my hubby and I thought it’d be akin to sin not to share some things we’ve learned over the past eight years.  This is in no way an exhaustive list.  Nor do I claim to be an expert.  It’s just my list.  My credentials being that I happen to love a little guy living with severe epilepsy.  Believe me when I say, we've been around the inpatient EEG block. Be Prepared to Wait Unless you’re one of those people who should totally play the lotto because things just always fall your way…you can expect to wait.  On the front and back ends of your hospital admission.  We have had the joy of visiting fou...