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Welcome to Shut Up About Your Perfect Kid

Therapy and sanity for ordinary parents of special kids.

Guest Poem by Ilana Jaffe

We are honored to share the work of the talented Ilana Jaffe. Ilana has ODD, ADD, and a learning disability. She also has a talent for writing.
Eyes Set on the Planets by Ilana Jaffe
(c) All rights reserved
Physically wired for chaos
with roller coaster tracks taped to my veins
sparks of electricity bouncing off my bones
gears and switches taped along my spine
alluding me to think they control this machine I call a body.
alluding me to think among them is a button
that could stop this motor that never seems to run out.
but even if my spine were covered with such controls
I wouldn’t be able to reach them anyhow.
My arms can’t bend that way
Mentally diseased with the need for absolute order
causing me to latch on and dig in to all things I deem
worth the aggravation and frustration repetition can bring.
endless rhythmic patterns that demand to be kept up with.
Thoughts that become as proverbial as the sunset.
A foreseeable consequence carefully perched atop
an instruction manual that’s missing a few lines,
leaving me to spend more moments then I’d like to admit
filling in the blanks
I have learned to abide
this shadow I still can’t describe
that walks with me.
Sometimes it leads.
Sometimes it follows.
Sometimes we walk beside each other
But a shadow none the less.
a kind of shadow that life depends NOT on the sun
but on me
for I somehow provide the necessary light
it needs, while its influencing my every action,
Singing: “That’s not how it’s supposed to be”
but a voice inside me,
that could be coming from my left foot, for all I know
sings back: “its not supposed to be anything”.
but no matter what I do
these two songs wont’ harmonize.
Despite all of this,
to the rest of the world,
I appear to be just another face of anonymity
for, it is always halloween
yet not one candy bar is given for this costume I have spent a lifetime constructing
just a pillow case full of words that make resilience
feel like a broken promise and a wasted investment.
I’m reaching. Eyes set on the planets.
but I cant get past the stars.
Now, the stars…they are beautiful
and on a good day I can see
that each star houses a struggle
and when I back up to look at them all
I can use my finger to create constellations
that I hope to show to my someday somebody.
In their own way, the stars are beautiful
But they are not the planets that call my name
They are not the planets that I know will click perfectly into the craters along my arms.
and I NEED them filled.
because if these craters are filled
I will be able to grow sunflowers out of the palms of my hands
long enough to reach the controls along my spine.
Giving me a chance to find out if they would be of any help.
If these craters are filled
I will be able to grow sunflowers out of the palms of my hands.
and written on their petals would be some of the words
missing from the lines that are missing from that instruction manual
So I’m leaving sticky notes around the house
with words to help remind me
to listen to my left foot when it sings:
“it is not supposed to be anything”
because, if that’s true
and its NOT supposed to be anything
then “it” has the potential to be everything
I know I am bigger than I feel.
and all the things I am and all the things I am not
are here and not here for reasons I am meant to discover
after a few more birthdays have passed.
I keep a telescope in my pocket
that lets me admire the planets when the sticky notes stop working
I tell myself:
“I WILL reach the planets one day”
and leave these stars behind
but on my way up I will wave to them
“thank you”, I will say
“You’ve been wonderful to me”
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