I Try to Remember
When the sound of your 6-foot–size-13-shoe self
jumping
hopping
grunting
threatens my very sanity, I try to remember.
I try to remember how it might feel
to live inside your body.
I try to remember all the times I held
your little hand in mine.
Fingers dancing against my palm,
desperate for relief.
The way your limbs strive for stillness,
as an army of little ants crawl and tap
with their little ant-y feet.
When your fear of the ordinary overtakes you,
and you are paralyzed by something like
the wind chill factor
a garbage truck rumbling past
the color orange.
I try to remember.
Anxiety is a horrible, crippling condition.
It is not a choice.
When you scream at me,
and hurl curse words and insults,
I try to remember.
Beneath the brittle shell of anger
There is a boy.
My boy.
My son.
A boy who is protecting himself.
Who has constructed his armor
against an unforgiving world.
Who has decided if he can’t flight,
he will fight.
When annoyance bubbles up from my stomach,
hot and sour and fast.
Because you asked about our plans for the weekend on Monday.
Or you lugged up all the Christmas decorations
the day after Halloween.
Or you erased a document on my laptop
so you could save the times for a movie.
I try to remember.
Your schedule is your lifeline.
Your foothold.
Your anchor.
It is a way for you to stay grounded
in the here and the now.
A way to keep from disappearing
when autism beckons you
with a long, crooked finger,
and the slyest whisper.
Come, Jack.
Come play with me.
When impatience gets the best of me
as I wait for your sentence to finish.
I listen for your words,
and struggle through your long pauses.
The urge
to snap my fingers,
tap my foot,
shake my head.
While you search for an answer.
I try to remember.
The skill we work the hardest for,
is the one we lose first.
I try to remember.
Your brain is different from mine.
When your early morning waking
becomes my early morning waking.
I try to remember.
Your circadian clock
beats to it’s own drum.
Heartbeat.
Drumbeat.
Offbeat.
And at the end of the longest days,
when tempers have flared
and tears shed.
I try to remember
to give us both a little grace.
After all, you did not choose to have autism
any more than you chose to have dark brown hair,
or great big feet.
When I am struggling to swim against autism’s relentless tide
I try to remember that you, my child, are drowning amongst the waves.
Deep down where my heart gallops,
I know what is hard for me,
is nine-hundred-million-plus-infinity times harder
for you.
Because living alongside autism
is not the same as living with it.
I am trying to remember.
I try to remember.
Sometimes I succeed.
Often, I fail.
I’m sorry.
Jack-a-boo.
Peg Powell
December 3, 2018 @ 11:18 am
And for those of us not living alongside it, we can try to understand.
K.Pulley
December 3, 2018 @ 11:46 am
Oh my! Beautiful and true.
Jeannie Prinsen
December 5, 2018 @ 12:54 pm
“And at the end of the longest days, when tempers have flared and tears shed I try to remember to give us both a little grace”- boy does that resonate. I am so thankful for that grace for myself and my kids. Thanks for writing this.