12/08/2023
Personal lil post-
December is, as for everyone, a bit wild around here. And melancholy and overwhelming for a million reasons. But this moved me so much I had to share.
My 6 year old Ozzie did his self portrait at art class last Saturday and his technique blew me away- like I’m not delusional, this is fu***ng GOOD- but it resonates in a more powerful way as his mom. He’s developing, so fast, a sense of self in every way. His values, interests, ethics, how he relates to the world. How he sees himself.
For friends new here, Ozzie was born with an extremely rare craniofacial condition called Goldenhar Syndrome, and that early time was my lowest. My worst thoughts. Making his condition - his entire birth- only about me, what I did wrong, how I stole his chances at a “normal” life. Ugh, I’m wincing.
It was selfish and shameful, but also important. It made me untangle my own internalized ableism, something that had been built up since I myself was the child of a disabled mother- someone who refused to see herself or her beauty and potential. In that process, I did find a mission: to eradicate systemic and everyday ableism, to advocate for not just my child but all children with disabilities, to break barriers that discriminate and harm. But more than that, it hit me- because I’m a fu***ng idiot- that’s Ozzie’s divinity, his wholeness, has nothing to do with me. He’s got his own story. I get to appreciate it from afar, and sometimes (like this week) I get a peek of what he sees. It’s enchanting. That beautiful little ear, his arresting asymmetry. He’s beautiful.
Through this platform , we celebrate representation and highlight the work of disability activists much better than me. We donate funds. We have a good time and sometimes learn s**t! We appreciate the beauty of each individual journey, whether it’s unique threads or the story of the person who wore them decades ago. This art (and his school photos which I ALSO received yesterday- I die) reaffirm how important those journeys are. Give yourself a look this weekend. You don’t have to draw it, or even love it, but I hope you see how vital all the pieces are.