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

Saturday, October 5, 2013

Silent lucidity.

Moments of lucidity were the one thing that I found tolerable of my father having Alzheimer's disease.
Most of the time he was not there, he was far away trapped in his sick brain...then all of a sudden there he was. His eyes would light up, the blue would come back almost glowing and his unmistakable smile would return to his face.
He would look right at me and for a few minutes he was back. He knew my name, his tone came back to his voice that I remember all those years before, and he was my daddy again...but only for a moment.
Then he would slip away again, back into some corner of his mind. He was gone.

Towards the end of his life I would just sit by his hospital bed and wait. Wait for moments of lucidity. We all know the love a heart contains for someone who means everything to you. I would've waited a whole week to just look into his eyes again for one minute.
Whatever it was worth, it made saying goodbye just a little easier.
It made being his daughter in the present situation a little more tolerable. For as awful of a disease Alzheimer's is, nothing compares to living with and in it.

The same can be said for Autism.

The other day Kannon had a moment of his own.
Granted he is very much here, very present every moment of every day, but he is still "lost" within is own mind...he is a prisoner of his very powerful brain.
This is Autism.

Whether he cannot process thoughts, language, situations, etc. He is constantly fighting to breakthrough to himself and to those around him. Watching your child battle like this every day is very taxing on the soul...let's just leave it at that.
So, I cannot imagine how frustrating it is for him. I just can't even begin to get my mind or heart to wrap around it...but lord knows I try.

Anyways, the other day as Kannon was sitting in his therapy room drawing away he came over to me as I sat on the couch just outside and he brought me a picture he drew. It was a very bright, textured creation that he did of pen and various papers he had lying around in his art bin. He even made a custom frame of frilled crepe paper...it was really quite something.

The picture was of him and I standing next to one another, smiling and dressed in long colorful garb.

He pointed at the woman and said, "that's mommy".
Then he pointed at the boy and said, "that's Kannon...Kannon is very happy to be with mommy in beautiful dresses."

Then what came out of his mouth made my face and heart freeze instantly.

"Do you miss me mommy?"
"Do you miss Kannon?"

Hmm. Well my first reaction to him was to ask what he meant...did he mean did I miss him while he was in the room drawing?
NO. He said.
Did I miss him while he was at school?
Do I miss you while you sleep at night?

"Mommy, do you miss the REAL Kannon..."
"Kannon is not always here...do you miss me when I'm here?"

I teared up as I looked into his eyes.
His very serious, very present eyes.

He knew that I understood what he was really asking.
I knew that he was so much more aware of his "condition" than I could ever be...he knew that even though we spend most of our days together, he is not always present.
He is not able to be as present as his heart would like.
His brain takes over and he goes away...his disorder gets the better of him.

He has moments of "lucidity" where for whatever reason he is able to break through.
I was just lucky enough to be there with him to experience it.

"Yes Kannon, mommy misses you every day...but I love you every moment because I know your heart is right here always."

"Thank you mommy."
"I love you with all my heart..."

He put his hand on my hand then walked away...and that was that.

A few minutes later he was back reciting Jack and the Beanstalk.
"Fee Fi Fo Fum..."
He muttered these words over and over as he feverishly drew pictures of beanstalks and golden harps.
His brain was back to Autism.

BUT, for a moment I had him, and more importantly he had himself.
It was wonderful.

It's those moments that my heart needs.
Moments that all humans need to feel connected to one another, if even for a second.
Clarity is a gift. One that should be recognized, never ignored or glossed over.

I am grateful.

peace :)

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