happy being trevy

Nature hikes and read alouds have become an important part of our lifestyle thanks to my infatuation with one Miss. Charlotte Mason.  I've been surprised with how much Trevor loves our nature expeditions. The heat holds him back during the warm months, but once the air gets chilly his stamina increases. He's usually the one begging to go for a nature hike every.single.day. I've been equally impressed with how much he loves reading aloud...and books, generally.  We recently started reading The Lion, the Witch, and the Wardrobe during our daily morning meeting. The morning meeting is when all of us gather in the living room for "together work". Last week we read the part where Edmund meets the White Witch who was riding by in her sleigh. During our walk today, Trevor plopped himself in this hollowed out tree, which with applied imagination does resemble a sleigh, and declared... Look me! I'm the witch from Nar...

A lesson I've learned while walking beside and loving my child with catastrophic epilepsy... He is far braver than words can capture and his words will always fail to fully enlighten us to all the complicated thoughts and memories he carries inside. We told him we needed to run an errand this morning. We didn't tell him it was to the lab for bloodwork. Clearly, some internal warning system had red flags waving because his anxiety was climbing. As we were walking to the car he began getting weepy. He was wringing his hands, with a wild look in his eye and saying, repetitively, "I don't know where we're going, though. I don't know where." I knew the moment to tell him had come. We are always honest with him about these things, though we do delay the process to save him as much anxiety as possible. I squatted down to eye level. Grabbed both his hands in mine. And told him we were headed to the lab. The words hung there between us. I could see ...

Lesson I've learned while walking beside and loving my child with catastrophic epilepsy... It's okay... even more than okay... it's crucial... to acknowledge his limitations.  There are so many things that Trevor can do. So many things we never thought he'd be able to. But... there are also many things he can't do. Crowds and noise, for example. I thought we might have to leave his sister's ballet recital the other day because he was *this* close to losing his marbles. Once the marbles are lost, there is no calming him. Thankfully, I'd packed his noise canceling headphones. It was really an after-thought because they're not usually enough. He's always surprising us, though, and somehow he pulled himself together and even managed a forced smile for me.  This is only one example, but the face is we are face-to-face with various limitations and challenges he faces, both physical and intellectual, ...