happy being trevy

Peaceful morning swinging often lures the philosophical from Trevor. Earlier this week he was laying back, arms behind his head, while I gently pushed and chatted with him. Somehow as were talking the number 18 was mentioned. He sighed, "I'm just thinking about me at 18." "Oh? And what are you thinking?" "Drive a car." He craned his head to make eye contact and observed my facial expression, which was probably a mix of sad surprise. He turned back around and continued, "Yeah, I'd love to drive a car when I'm 18." At that precise moment we heard a rumble in the sky above. After a pause he said, "Or an airplane." What am I going to do with this boy? First a car? Now planes! It's the sweetest thing that he's grown very aware of his "special needs". In fact, if he likes a person, the first thing he wants to share with them is "my special needs". When we meet random strangers in...

My heart has been an avalanche this year as Trevor's seizures have re-emerged. While I share my heart fairly openly, there are many layers of which I speak nary a word; some pain is meant to be private. One source of shareable pain and frustration is the perpetual bumping up against those who cannot seem to grasp the staggering, impetuous nature that is chronic, catastrophic epilepsy. I tend to be good with the words, yet try as I might to apply the most bold, expressive language possible when describing Trevor's seizure disorder and how it impacts our lives every day, every moment, still, there are those who minimize or remain blind to our struggle. Some, even as they bear witness to his seizure disorder with their very own eyes. Jonathan feels we own a bit of the blame for this. We live quietly and strive for peace "in spite of". In short, we do a damn good job of "holding it together" which allows room for misinterpretation by the undiscernin...