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

Tuesday, March 9, 2010

Diseases that start with "A"

Specifically Autism and Alzheimer's.
I have dealt with both, and hopefully will never have to deal with the latter again.

The similarities between the two personally astound me sometimes. I find myself having deja vu every day with Kannon. I find that sometimes it helps me in grieving my father, and others it just makes the hurt deeper.

The blank looks.
The confusion, hurt, and emotional pain I see him go through.
The inability to communicate your feelings on a human level.
The loss of physical and emotional survival tools.
The constant judgement by others and being misunderstood daily.
Lack of friends, social interactions, and shunning of society.
Autism and Alzheimer's.

I don't believe I will ever find true peace with my fathers passing.
His suffering was unimaginable, yet I witnessed some of it firsthand, and his last years on earth were just plain pathetic.
The hardest part for me to accept through all his battles with Alzheimer's was the loss of his dignity. I could never get over that. To see my childhood hero loose it all...that pain will stay with me always.
He was such a strong man in his early years. He loved life, family, and had an energy about him that was contagious.
My house was always filled with friends or visitors...good thing my mother was a great cook, as she always was in the kitchen feeding people.
I loved the hustle and bustle of it all.
I loved hearing laughter and chatter as a constant background noise.
I loved that people seemed to want to be with our family and that they found our home a place they could put their feet up and relax.

Funny how quickly that changed after my father got sick.
People didn't come around as much.
No more pop ins or drop bys.
No more chatter and laughter filling our home.

I know it broke my dads heart.
I saw it all over his face every day while he would sit in his chair looking out our back window to the mountains. I never saw him cry, but I knew he was heartbroken.
After all his years of entertaining people and laughing....he was now silent.
Even though he was sick, he still had many moments of clarity where he knew exactly what was going on...even how sick he really was. I think that simple realization alone pulled him so far into himself that Alzheimer's took him.
And he never came back.
Our home was never the same, and he was gone...inside himself somewhere.
I always thought he was back to the good times in his head...back to when our home was filled with people and parties and food...back to the laughter.
I hope so.

Having a child with Autism can feel the same way at times.
It is never easy to just jump in the car and go do something...anything.
You can't just drop by people's homes to say hi without constant worry your child is going to trash the place or get into something they shouldn't.
People don't tend to really embrace your child either.
They don't just get in there and play with them....they don't swing by your house to chat or put their feet up and relax.
Who can blame them though?
It is hard to interact with an Autistic child if you are not used to them...and god knows no one is "used to them".
I'm a mother who deals with it everyday and I still find myself caught off guard sometimes when I am around other kids with Autism. Autism will do that to you...it never is consistent.
Point being, it is much more difficult to have an "open" home when there is a child like mine in it.
I want more than anything to have people always here...always finding comfort and laughter here. I know it is possible. We have friends who are amazing with Kannon and who genuinely enjoy his company...but it takes patience, and it is not for everybody.
I do consider myself and Kannon lucky that we do have some amazing people in our lives who love him, and find the laughter within him and themselves.

Autism I have found, just like Alzheimer's, weeds out certain people in your life.
Or perhaps it just forces you to live a certain lifestyle that may not be as social, open, or free as one would prefer.
It tends to isolate you.
I hate that.
This is one issue I will fight.
I refuse to believe laughter cannot be part of this all...it can.
I laugh every day with Kannon, and at myself.

I hope my dad is now laughing too...at Kannon and I.
Looking in on our daily adventures of life.
I hope he is proud of me and of Kannon.
I hope he knows what he went through was NOT for nothing...
It made me a better person.
A stronger person.
One who now has some of the emotional tools needed to raise Kannon.
For without my fathers suffering and journey, I would not be able to do the things I do every day for Kannon out of love...out of respect...out of hope...

Just no more "A" diseases in this lifetime please...
I'm good.

peace :)


  1. I love you!!! Amazingly put!! we need to talk soon...hoping to be in the area Early part of April-We will laugh our asses off!! Your Brother,Chris.

  2. Kary, you are an amazing writer! So interesting to hear your life and so interesting how similar mine has been! I work with people with developmental disabilities and have some knowledge of autism. If you are interested in moving back to Colorado I would caution you against it as our state is 48th in the nation for funding.

    Similarly my Grandmother had Alzheimer's disease and we walked with her through many stages. Such a tough disease to watch. I'm sure it didn't compare to watching your father go through it.

    Just wanted to let you know I viewed your blog and would love to chat with you more.

    A Child with autism can be challenging but your son has been blessed with a GREAT mom.

    There's so many new studies and findings everyday! Keep your chin up!