unbearable lightness of being

Its one of those days when my son has kept me up all night being difficult to say the least.His blanket was skewed, he couldn’t reach the  juice sitting next to him. My leg was touching him.He didn’t like the movie.He wanted my pillow.  

A chant of  ” mmommy,mommy,mommmy! In his high pitched ,frantic monotone shriek. I finally say ” what son?  All of this at 4 am. It is these days that i reconsider the meds that have been offered to him..But i feel guilty that I cant handle it. That I am not enough. That i have made some egregious mistake in a past life, to have made my son suffer so.

My son sniffles and finally answers, his panic attack abated for now whispers

“I love you”

I am 34 and  have progressive M.S. also somthing nicknamed the “suicide disease”  i mention these things first, because , right now that is what defines me. My shortcomings. My temporary blindness.The pain in my face.And the silence.

Using my cameras. Giving away my cameras.

Which by definition ,has become an extention of my loss of vision. Trying to capture everything i see. Mostly my children.All the beauty in the world.All the colors.Before it goes

I want to see as much beauty,and tattoo my entire body. Before i go blind or end up in a wheel chair.Is that so much to ask? Also. i want a monkey.