Tuesday, July 21, 2015

What Does Our Daughter's Autism Look Like?

She's at a movie theater, she is sitting next to me, legs folded "cris-cross-applesauce." She keeps her eyes peeled on the screen, pausing every few seconds to scrunch her tiny nose.  "What does despicable mean?"

"It means really bad, please whisper," I say "We are in a movie theater.  It is a quiet place."  She stares intently still, not removing her eyes from the screen.  She rhythmically pulls on the bracelet that surrounds her slender wrist.

"What does villain mean?"

"It means a bad person, remember," I say "We are in a quiet place." I shift in my seat.

She rocks gently back and forth in hers.

We are at the library, a gentleman is there to showcase snakes, a special viewing for children.  Around us are parents and small children of various ages.  Before us is the presenter and aquariums covered with sheets.  My daughter sits in front of me, surrounded by her siblings.  "Does anyone have any questions before I begin?" Several hands rise.

"When are you going to take the sheet off?" She yells.

"You can't shout out," I gently say "You must raise your hand."

"Are there snakes in there?" She hollers over me and the crowd.

I put my finger to my lip.  She looks through everyone as if she is the only one in the room.

Her brother's foot gently brushes the back of her leg. "Stop touching me!" She yells.  "You know I don't like it when you touch me!"

I can feel the stares sinking into the back of me.

We are at the ball field, an earned promise to our children, a game of baseball and a picnic on the field.  Her siblings are laughing and running despite the heat and sweat that is overcoming them; gloved hands, tightly gripped bats, soaring balls.  There are smiles everywhere.

Inside the dugout she sits, alone, book in hand.  Completely content to not participate.  She does not feel left out.  She is partially in her own world, and partially taking in the world around her, trying to grasp how it operates and what feels right to her.  She is learning what parts she wants to own and what parts she wants to discard.  She is figuring out how to be graceful in a setting  that was designed for those less unique than she was created.

It is not easy, it is not comfortable, but she is doing it day by day.  This, is our daughter's autism.

Monday, July 6, 2015

How this Special Needs Momma finds her Peace

They approach her bed, something is fiercely wrong.  Her alarms sound quicker and louder, sounds I have never heard before; noises I cannot connect with the reality that is vastly falling around me. 
I watch her lying there, nearly lifeless, although she must be living, the alarms tell me at least this much is true, so why isn’t she moving? Why isn’t she responding to their shaking, their vigorous rubbing, their claps, their yells.

I stand there completely still, as if I am not there at all.  I now know the truth and it isn’t safe with me.  I have no idea what to do.  I feel useless, afraid.  I close my eyes and try to find my peace.

It’s hard to imagine not having that one place your mind can always turn to; that one security, a place no one can harm you even in plain sight.  The world and all it’s unthinkables cannot touch you there.  The flesh wounds that each day inflicts are healed here.  In this place I am safe.  In this place I find my peace.

It’s 3 A.M. an ominous light peers through the window as I lie awake in a hospital bed.  It outlines everything unfamiliar that surrounds me, ending it’s design at the jarred door.  The hall lights are dimmed, like a drug store that has been closed for the night.  My family is tucked away elsewhere, my kids fast asleep.  I am alone.
I am here to rest and recover, but resting I cannot do.  Nothing here is familiar, or mine.  Even the pain inside my body feels foreign.  The blankets that are meant to keep me warm are brittle from years of being bleached and reused.

The IV pumps, forcefully, interrupting my thoughts.  This is not my place.  I close my eyes and try to find my peace.

As I finish my nightly routine making sure all of my children are tucked gently into bed I too find my way to my resting spot.  As I climb in my worries begin falling steadily to the floor.  I roll on my back, the softness of my mattress consumes me.  I exhale deeply, and inhale again.  In this place I am safe.  I close my eyes and try to find my peace. 

I take a look at my daughter.  She has more medical interventions than I have seen most people manage outside the walls of a hospital.  Some days I wonder just how we got here, and could we ever go back? It hurts to think about the choices we made and how different things may have been if we had just done “a” instead of “b” or the reverse.  Thinking like this does not help, it only leads to more pain, a heart that bleeds tears that sting the flesh.  I close my eyes and try to breathe.  My chest feels heavy.  I try again to find my peace.

You had a rough day.  You cannot go back in time.  Searching for reasons only brings more questions.  Searching for questions, never seems to bring answers.  You have made your choices.  The road you chose to take was a one way road.  It is too far gone now to turn back, just breathe.

If you got through yesterday you can get through today.  Put one foot in front of the other.  You can only move forward.  Moving forward can never get you behind.  Go, move, and find your peace.

My day begins and ends with the only place I need to be, immersed in my faith.  It is the pacifying warmth that protects me from a world that is a little too flawed.  In my faith, This is where I move through the pain, despite the pain.  This is where I am safe, this is where I have peace.