Novocaine

An Open Letter

Your 18-million-dollar film
illustrates a painless life as a superpower.
The protagonist -
battered with bullets,
flesh charred and impaled
a dip in hot oil (that fucking boiling oil),
nails ripped from human flesh -
walks away with a smile, a wink.

My child, diagnosed with the same rare condition,
self-extracted twelve baby teeth
was roped to an ER bed
with a chewed off tongue –
that muscle mangled,
oozing violent blood, from his 15-month-old mouth.

Mr. Movie-man, want to fetishize it more?
Speak to any parent of these superhero’s
and you will learn their babies’ bodies have been mutilated
broken, scarred, and torn –
often to no return.

They have lost lips
fingers
eyes
and limbs.

Blood not a prop,
gore not for laughs,
CIPA children are not as lucky as your everyday-guy-turned-hero.

You borrow our grief for entertainment
so have the courage, no -
the decency to speak with someone who loves a person who feels no pain
before you portray this condition
that shatters my heart every day,
as something to be desired.

(written last March after being fed the movie trailer on Instagram, where-in I immediately threw up.)

—

“He’s so tough.”
The phrase an unforgiving refrain that follows me in all places. As if I could forget, even for a moment, that he is not at all.

Well-meaning parents, shit parents, good parents, they have this in common:
my child falls or flips, bruised and bleeding - unresponsive to the pain, like it didn’t even happen, like he didn’t feel it and their eyes dart from him to me in silent questioning - Did I really witness that? Reassure me.

In honesty, I would say it too.
I can imagine the words they’re so tough spilling between my lips, brightly unaware of the weight three little words hold.
A whole world.

I’ve read stories of school-age children who don’t feel pain being bullied. Their classmates finding out about their condition and the conducting of their own experiments begin.
“Prove it.”
“Show me.”
Stabbed with pencils, pushed off slides, noses broken, faces slammed into lockers. Tripped, run over, and yes, nails ripped off. This movie shouldn’t exist.
Tell me, why do we sacrifice children for profit? How is this even a question?

—
I am a cloaked woman - a mother stuck in waves of mourning, for years attempting to blend with the living. I’ve watched my friend’s children start daycare, pre-k, and kindergarten. I am so happy for them. I am glass on the floor. Both are true.
I’ve been told two things can be true.

Like when we consider what we have, in the wake of what we believe to have lost, there’s a possibility we’ve touched something sacred - something liminal. We dwell in the middle stages. Forever in the in-between. And within what has been written, there is a choice. I see my son, and I climb. Claw and scratch and blaze my way to the top.

You need to know, the beauty of my child is alarming - he is the sun. A modern Baldr, the bleeding god, whose invulnerability was forged by the hands of his own mother.
The lengths we go.