Poetry
by Susie Baretz
Luggage
and Greeting Cards
Hallmark and the artists on Billboard's
Top Ten never thought of this.
They never thought to describe the feelings that lie inside me
-
Ones I barely know how to describe myself.
No card or song illustrates the experience of living not only
with autism -
(in truth that would almost be easy)
But with the terrifying opponent of self-injurious behavior,
an opponent I would gladly take on myself if it would just leave
my boy alone.
So no, my life is not reflected in the
songs on the radio.
Never have I heard a set of lyrics describing utter emotional
exhaustion, deep fear of the future, or
the constant heightened arousal in anticipation of the next fit
that must be battled.
I have yet to see a card that says,
"I know your child has autism and is self-injurious but…
Chin up, maybe the sun will shine again tomorrow!"
No card expresses the anger I feel for
my child not because he can not speak with ease
and has no desire to make friends,
but because at any moment he too has to fight a daunting opponent.
My boy is a drafted soldier and I would do anything to abolish
the draft.
No, I have never seen a card that describes this state of affairs.
So although I do see myself in some songs
on the radio
and do have occasion to receive Hallmark cards from time to time,
a major part of my life's experience goes unseen and unsung.
Is this unfortunate invisibility?
Is it a necessary glimpse of the world without the weighted blanket
of anxiety?
Depends on the day.
top
Naked
Soul
It's pitch black out.
No one is on the streets.
Houses are quiet and most people are peacefully resting in their
beds.
Souls slumbering.
Although there are two of us driving through
this dark night,
I feel desperately alone.
There is no one with me to share how insane this is,
me and my boy driving around at 1 in the morning looking for
an open store.
Looking for a store to buy…anything;
It is just something to do.
Neon light after neon light we pass as
my anxiety grows.
If we don't get to a safe place to stop soon,
the inside of my car may become as violent as anything that could
happen outside it.
Tick tock.
I am the only one who hears this clock.
Finally.
Dunkin Donuts appears and my eyebrows relax.
Short lived…
"Wait… What the…"
Suddenly I am fending off my son -
attacking me from the backseat.
Focus - get to a place of safety.
Car parked.
Coffee for me. A bagel for him.
Peace restored inside my SUV.
But not inside me -
utter despair, fear, and sorrow take the space anxiety left just
five minutes ago.
I begin to cry as I look at my gorgeous
son,
calmly pulling at his bagel while staring out the window.
What is going to happen?
Where do we go from here?
There is no one with me to answer these
questions.
These questions that have come more often in the past year than
they ever have.
There is not even the radio to distract me from my head.
Fully dressed, my soul has never felt more naked.
top
Now
Research, Research, Research.
Perhaps in 10 years…perhaps in 20,
we will know how we got to where we are.
Maybe in 5 years…maybe in 15,
we will discover the paths were many.
Possibly in 2 years… possibly in 7,
we will find our attempts at change ill matched and ill suited.
Hopefully someday… hopefully someday
soon,
we will be able to put up road blocks on many of the paths that
have led us here.
In the meantime, In the meantime, In the
meantime.
This is where I live.
This is where lives matter now.
Certainly focus on the unborn and the as
of yet conceived.
But neglect us not.
Bear in mind those who are more than the end result of what you
are all trying so desperately to prevent.
Our lives matter.
They are full of meaning, light, life, emotion, experience, potential,
and love.
No, neglect us not.
We deserve better.
top
Laughs
and Smiles
How do I feel when my child smiles my way
or
laughs with abandon?
Words can not do it.
They are ill equipped.
Unabated, raw, sublime.
Okay, but not quite.
Exuberant, intense, elated.
Yes, those too.
Proud - certainly.
Love - beyond a doubt.
Words can not do it.
Thankfully, none are required.
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