The Feeling of Raw

Sometimes in the afternoon, I bring Jude to our bed and lie down to nurse her. I love the way her small body fits so closely into my mine. She watches me intensely as she nurses her eyes focused on mine. I don't want to look away; afraid that if I do I will miss her imprinting on my soul. I love to stroke her hair, run my finger down her cheek. I have to touch her to make her real sometimes. The intensity of my feelings towards this tiny being scare me because I feel that to lose her would destroy something inside me. And because I feel guilty--as if I don't deserve her.

Walking around in public with her against me, usually sleeping, her warm breath on my chest, is like walking with my skin turned inside out. I am hyper conscious of every glance our way, of the words people use when they talk about her. I bristle at the inquisitive looks I imagine on the face of strangers. The words of pity that come from people at times rubs against my inside out skin leaving angry rashes.  Crumbs are not what Jude deserves and I feel like we are often handed these crumbs as if they are the finest confections.

When I am in this skin, every hurt, every insult, every slight to every disabled person stabs me. I am doubly wounded as I was once this person who said stupid things in ignorance. I want to time travel so that I can go to each person I hurt and say "I am so sorry. I know now." But then I am stricken because I do not know. I can never fully know. I am not disabled. And I feel this chasm grow between Jude and I. I wonder if I will be able to build a bridge to reach her. If someday, she will say "You don't know. You don't belong to my world."

I am full of rage. Sometimes I am walking around strung taut--an unbearable pressure. I feel as if the slightest touch, a caress like a feather will break me, and I will explode in thousands of pieces. 

Perhaps I am over-sensitive in this rawness that came ever since someone told me that my baby had Down syndrome. I am not sad. I even want to write a note to the Dr. saying "Thank you for giving me some of the best news in my life." Jude is not a burden. I do not wish her Down syndrome away. It's not a thought I pursue. Jude is quite simply Jude. I am everyday washed fresh in her presence. I am shining like a hard diamond in the gift of her gaze. My love for her is stretched out to embrace the universe. But I am fierce and raw and angry because the world is hostile.