Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Wednesday, May 8, 2013

love gets me through. writing gets me through. until then...

When the day comes that I am introduced to Kannon I will be ready.

I will always remember when it hit me that I may never know him.
Never know his dreams, his future, his potential...
It was the day he was diagnosed with Autism.
Realistically I knew he had Autism, but until I paid a professional to evaluate him, test him, and write a 20 page report on him which included his clinical diagnosis I just didn't want to believe it.
It truly is humbling when you see something on paper, in black and white.
It literally brought me to my knees...in my driveway on a beautiful sunny day.

The spirit and love a parent encompasses for their child is nothing short of painful.
A pain so deep, so profound, and so pure that without it one would just feel empty.
It is a beautiful, wonderful pain...but it still hurts.

As a parent to a child with Autism the moment I found out Kannon's future my heart felt an entire new pain that I couldn't understand in the beginning, and am still exploring today.

The best I can make of it is the feeling of not knowing, understanding or controlling anything your heart feels from moment to moment.
You know how you should feel, yet you react an entire different way.
Rationale, reason and logic go out the window...there is no such thing in relation to loving a child with Autism.
One minute I can feel loss, the next hope...Peace, then anger.
Your heart is constantly counter balancing itself, out of surviving the pain you feel deep down.
I had a friend once tell me I was in survival mode. A very obvious outside observation, and one that at times is necessary to get through a day that I can have.
The thing with Autism is that some days you just have to get through it...you have to numb yourself out, because if you really sit in it for too long you will drown. You will get overwhelmed by the emotions, the reality, the rawness of life that is thrown in your face compliments of the disorder.

You have to sit there and watch your child struggle.
You have to observe the behaviors, the physical turmoil, the emotions lurking behind their beautiful faces.
Sometimes you just want to shake them. Shake them until they break out of this body they have no control over.
You just want to meet your child. Know who they really are behind ALL of this. Know why they can't just open their mouth and talk to us. You want to feel connected to this beautiful person you created.
Again, the rationale is one of non existence in the real world...it just doesn't make a dent.

As a continuum, the one emotion I have never felt is completion.
I may never feel this with Kannon.
I may never have the chance to sit down with him and hear him...really hear him.
Hear his fears, his thoughts, his sense of humor...why he does the things he does.
I may never formally be introduced to Kannon.
I may never get to hear his true voice.

That kind of pain is one I cannot wrap my head around or put words to.
It just is. It is my every day.
I suppose the take one day at a time mentality is best for this.

It is part of this beautiful pain I spoke of earlier.
The love, the hope, the peace you want to feel every single day...but sometimes just can't.
Sometimes the counter point to what we want in our lives may never evolve.

In spite of it all, I still hope every day I will be able to one day sit next to Kannon and talk about it all.
To hear his experiences in his own words...and that will be the day I stop writing.
I write to hear his voice in my heart.
It is my way of balancing out the pain...

I write to hear his voice in my heart.