happy being trevy

Most of the seizures Trevor has had throughout his life have been quick, jerky movements. In seizure-ville, these are known as Myoclonic Seizures . I've seen hundreds of thousands of these seizures since he was 7 months old. I hate to say that I've grown comfortable with them. Because I'm not comfortable with seizures.  period . But I know these nasty little beasts. They are predictable for me. I know when to worry and when to just give him cuddles. He has yet a new seizure type emerging, though. And it’s totally throwing me for a loop. I hate them. They are so much more visually disturbing. His right arm raises up. Not straight, though. It’s crooked. Shaped like a half moon. And sometimes it will rest on his head involuntarily. Almost like he's patting himself. His head turns slightly to the right and his eyes are…just weird. Everything slows down. His movement, his speech. To me, it feels like I'm watching a robot "power down". His body kind of ...

  This morning as I was preparing to watch Trevy’s K class perform their end of the year celebration, a memory swirled in uninvited. In my mind I was swept back nearly five years ago, when a young woman asked if she could meet with us. We invited her to our home where she proceeded to apologize for gossiping about us and then justify why she did. She was disappointed in Jonathan's leadership, see. So the gossip was of course warranted. I’m still not quite sure why she ever tagged the I’m sorry on there. Clearly, she wasn’t.   When we reminded her that just two months prior Trevor had survived having half his brain she removed...her response was...   It's been two months! Aren't you over it?   I'm not sharing this to beat up on her. Okay... so maybe a little . Wink.   But also, this morning as I was preparing my heart to watch Trevor perform his K celebration play - I knew that he would seize. Stress is a trigger for him. And standing in front of others i...