Friday, July 18, 2014
I could possibly make this another #don'tstarepaparazzi post, but I won't
and let her stare right back at you. Sophie does look a bit weary today, these days -- we're still struggling with a lower CBD ratio oil than we'd like, and she's had a seizure or so nearly every day. We really do think and hope that it's the oil, that once she gets the stuff she had a month or so ago, she'll go back to being seizure free for days and weeks at a time. The good people at Realm of Caring are working hard to help us. Our community learned yesterday that a little one with Dravet Syndrome (the same disorder that Charlotte of Charlotte's Web has) died in New York, waiting for the damn medical marijuana political wheels to move in that state. It's hard to not feel angry or impatient or despairing when children are dying for no good reason, anywhere in the world. That kid with the curly hair, lying contorted on a desolate beach, blood pouring out and into the sand. A child, among hundreds, blown up and out of the sky, landing in bits on this sorry, contested earth. You know I'm not a religious person, and I don't believe that there's a divine reason for every single thing. I believe, most often, in the primacy of chaos -- is there a term for that? I guess you can make meaning out of the chaos, make good out of it or gain some wisdom, let the light of Love in, but it's damn hard not to cling, to desire, to crave -- the root of all suffering indeed. When it isn't a bonfire and smoking hot, anger is like tendrils curling around my ear, edging out my nose as I grow older, at the tips of my long fingers where I grip the wheelchair, laid over the widest part of my foot, bearing, daring, even, the whole thing, my body, to take another step.