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

Monday, January 16, 2012

denial. one of my life lessons.

Sometimes when you love something or someone so much it is almost normal to be in denial when something is wrong.
When your heart is heavy and that moment comes when you realize something is off within your internal guts...you have that feeling of fear...of having your feet swept out from under you.
Fear of the unknown.
Fear that whatever the problem is you won't know how to "fix" it.
That is when denial digs in.
Denying to yourself that there is a problem because somehow you instinctively know that it is going to be really hard to change or fix it.
Hard, life changing work.
Knowing your heart deserves better...that you need humbling...you need balance...you need peace with yourself.

That old cliche, "Nothing worthwhile in life is ever easy"
This is why sometimes, some people find denial an easier alternative.

When Kannon was a baby there were no "warning" signs that something may be wrong with him.
He laughed...he cried...he started walking at 10 months...he got into trouble...he physically looked fine...

Not until I put him in daycare 2 times a week when he was about a year and a half was there a reason for me to open my eyes just a little wider and feel concern.
He wasn't as chatty as the other kids, in fact he wasn't chatty at all...
He had no vocabulary.
How did I not realize this before?
How, as a mother did I not notice my own child had not formed a single word yet...
I looked around and saw the other kids labeling all the animals in the room, talking about the different colors in the displays the teachers put up around the room...it was like being hit by a semi truck, my head was spinning and I panicked.

I remember going home after seeing all of this and calling my mom.
Who knows if I made any sense during that conversation, but I do remember saying "I think something is wrong with Kannon"
I remember her telling me that "He's just a boy...boys sometimes just take longer to develop than girls do..."
My pediatrician told me pretty much the same thing that next week when I made an appointment to come talk with her about my new concerns.
Truth being, I believed them.
These were people who I trusted and who I knew had Kannon's best interests in mind.
Truth is, I wanted to believe all of this.
That Kannon was just slow...that any day now he would start talking...that his behaviors were normal for a boy his age.
I mean after all, it wasn't that far fetched for these to be his truth...

How wrong I was.
Looking back today, it all makes me shake my head and just laugh.
Not because no one knew what was wrong with Kannon, but because as a mother I was in denial that something WAS wrong with my child.
My heart did not want to face such a big, scary concept.

6 years later I can be honest about those days.
How damn hard we have fought to get words to come out of Kannon's mouth.
How I will never ever again in this lifetime take for granted the graces of every day life...
How powerful denial can be.
It is the blanket of the soul.

Stop. Look around. Realize what is happening to you and embrace it with all you can...even if you can't understand an ounce of it.

Being a parent to a child with Autism could possibly be one of the most difficult jobs ever...then again, I have only had a few jobs this life so what do I know.
However, being a first time parent with all the anticipation, hope, love and wonder that fills your heart is something I can speak of with accuracy.
It is one of the most amazing experiences ever.
It is the transformation of life, soul, and hope for all you know you were meant to be in your life.

So, you put these two things together...the first time parent and having a child with Autism....
It certainly puts your life into a whole new arena.
It is an emotional contrast of the most extremes colliding at once.
It is also one that more and more families are having to face every day...one that even professionals cannot help you navigate...one that is completely misunderstood by society.

Welcome to Autism.
Welcome to the rest of your life.
And although living with Autism is filled with many challenges, I am here to tell you it is one that can be done.
It can be done with grace, honesty, hope, and love.

I am only speaking from my experience.
From my belief system.
From my heart.
From my lessons of denial.

I had no idea something was wrong with Kannon until that day in daycare...
And from that innocent moment on, my life was turned inside out, upside down, and grounded all at the same time.

But it has become a journey that I have accepted.
In the beginning I was in complete denial, I did not accept any of my reality.
I did not want to experience my life because the unknown was so overwhelming and so scary that it was easier to just push it back.
And did I ever push it back.
I denied the pain.
I acted out every day out of fear, self pity, and pain.
I never for one moment had the emotional grace to think of my own son, what he had to be feeling, how hard this all must be for him...

I watched as Kannon fought every day for life without realizing how hard he was fighting.
I watched him cry out of frustration...cry because he couldn't understand himself.

I sat there next to him while he would scream in emotional pain, his body having tantrums...

It was not until I came out of my "fog" of self denial that I really saw what was going on.
I was not letting it in.
All of this pain and struggle I was so used to seeing for years was numbing my soul.
I watched my father slowly die from Alzheimer's for years...and then I had to watch my son experience Autism.
It truly was too much for my heart to handle at once.
But the fog did clear...and I honestly have no idea what made it clear for me.
If I had to guess I would credit it to a few good friends who loved me enough to carry me through and talk to me with loving, honest words...and of course time helps one heal as well, as long as you use that time wisely.
I didn't have the perspective, luckily I had a few people in my life who did.
Pair that with a stubborn, strong minded person...well it all worked itself out.
I worked out the anger, hate, and denial.

As for having to watch Kannon go through what he does every day, it is beyond humbling.
I have no reason to ever complain or find any person I encounter not worthy of compassion.
It may sound strange, but I have had the honor to see what real pain is...I have seen death and I have seen new life...

This is what saved me.
To see a human soul that was not in denial.
That simply wanted to live a happy life and who didn't care what other people thought.
To watch someone transform impossible emotional situations into a smile...
How could I not let go of my own bullshit and know that life is possible if you fight for yourself.

I have seen a simple, innocent soul who came from love grow into nothing short of a miracle.
Not because of some divine intervention...but because of hard work.
Because he wanted life bad enough to fight for it.
Because he would not allow any false situations into his reality.
Because he was not in denial about anything...
His purity of spirit is so raw that it can't help but slap you in the face and make you smile at the same time.

He chose to enjoy the show over losing.

Kannon knows the bigger picture is worth it.

His progress is inspiring, as is his fight with the disorder he was born with.

We all have our "stuff" in life.
To deny our truths will only set us back.

I forgave myself awhile ago for the mistakes I made, for my actions I made out of denial.
I forgave whoever and whatever it was that "gave" Kannon Autism.
Kannon never blamed anyone.
He may never see his disorder face on...in the physical, logical sense...
But I believe he knows himself better than most people do.
He knows he is pure of heart.
He loves himself more than most people will ever fight through to learn to do for themselves.

This is how life is possible.
This is why our family will conquer Autism, even if only in the emotional sense.
We cannot deny that it is our truth.

It is our truth.

peace :)


  1. Oh, Kary, this is so overwhelmingly beautiful! The truth in your words, the reality of what you went through speaks our reality. I love this--"
    How could I not let go of my own bullshit and know that life is possible if you fight for yourself." It was as if I was slapped in the face. I wish every single day for grace just as you have showed every day with Kannon. And an addition to my things to do this year: Let go of my own bullshit and fight for joy. :-) Thank you Kary!

  2. Utterly beautiful Kary. True, inspired, poetic, hopeful, forward looking. You and Kannon inspire me bunches.

    I hope we can get together soon and chat-lots to catch up on!

    All my love (and Gus and Duane's)--