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

Friday, October 7, 2011

the inevitability of it all

I was at a HOA meeting a few weeks ago and at the meeting was my neighbor, a man of about 45 who has Autism.
I have stopped and spoke with his mother before as she recognized the all too familiarity of ticks she saw in Kannon.
As I mentioned in an earlier blog note that conversation was mind bending for me...

Anyways, as I sat in the HOA meeting all I could do was watch my neighbor.
He had brought along a clipboard and on it were pages of crossword puzzles ripped out that he was feverishly working on throughout the 1 hour meeting.
If you didn't know any better you would not even know something was "different" about him.
That is until he lets out one of his loud grunts and gets up out of his chair for no reason, walks across the room and finds a new chair...I watched as most people in the room raised their eyebrows in confusion.
Then there was me...just smiling at him the whole time.
I also got a glimpse of his crosswords...no words, just beautiful patterns he had formed on the papers by coloring in the boxes...

Obviously I have a soft place in my heart for people with special needs or disabilities because of Kannon and my father.
But what I don't yet have a grasp on is how to handle the months/years I have ahead of me.

I looked at my neighbors father who in my best guess would say is around 70, and he still had that look of concern and wear that I see on many faces of parents with special needs kids.
He still watched his son's every move, still went to the bathroom with him, and still held his hand as they walked out of the meeting...
He even had a bag full of "stuff" that we all know too well. The one that has any and everything in it just in case our child has a meltdown or looses their focus all of a sudden.
I saw him pull out pens, a calculator and some sort of juice for him during the meeting.
Still after all these years...he was still doing all these things for his grown son.

The love of a parent never fades.
The concern of a parent who has a child with special needs never fades either...
In fact as the years pass I find myself panicking at times when I think about what will happen with Kannon when I pass on.

This is the one thing that I have yet to find true peace with in my life.
How can I know that he will be alright when I die.
Who is going to love him...will he ever find love on his own?
Who will laugh with him when no one else does?
Who will protect him from the people who don't understand his ways?
Who is going to carry his bag full of "stuff"...

I find this part of my life to be the most chaotic.
Whenever I try to think about it rationally I find no solution.
If I try to make a plan, there is not a one that my heart feels good about...

I can only hope that someday, wherever Kannon's path in life takes him it will find good people.
People who can smile with him.
People who will laugh with him.
People who although may not understand why he does certain things, will still see him as a person.

Although I know it is impossible for someone to feel the love and compassion that I do for Kannon,
I know it is possible for Kannon to continue to live on just as happy and safe as he does now.
I know he will always find things to laugh at and explore even if I'm not there with him...

So I will try not perceive it as "inevitable"...
The uneasy thoughts I have about leaving Kannon behind.
I will continue to hope for a better tomorrow for him and all the other kids who have special needs.
Because they do grow up, they become part of society...they become adults.

I will consider myself lucky that I may already have found that one person I will truly grow older with every single day, and that I have a lifetime to continue to show him what real love is about.
So that when I do have to leave him his heart will just know...it will be full...it will get him through...

I will continue to share our stories in hopes of a better understanding towards Autism and the families affected by it.

I will...because life is Inevitable, so is the love we give every day.
The one thing I have learned so far in all of this is that even though there are times I feel like I am not getting through to Kannon, like I am talking to a wall...like I am loving someone who can't love me back...
I have learned that no human soul is capable of denying love...no matter what reaction or lack thereof we may receive.
Love gets through every single time.
Every word we mutter to them as they lay in our arms crying, every hug we try to give them as they pull away, every tear we wipe away from their face as they cry and cry out of pain...frustration...exhaustion...
They feel our love, our actions, even if they can't react to us.

I have to believe that Autism was "given" to certain people for a reason.
It has to be one of life's most challenging tests of patience and pure, raw love.
The thought of being trapped in my own body without a way out is overwhelming, and yet Kannon lives this truth every day.
He was given a challenge so huge that no doctor or scientist can yet figure out.
It is very real, very big, and for some reason it was given to our family to figure out...
And we may never.
But we will always have our love, and it has been strengthened to something beyond this world because we have been trying so hard to "figure it all out"...

I think I got lucky.
A lot of us did.

peace :)

1 comment:

  1. Oh, Kary, this is so beautiful...You are exactly right, Love gets through every single time. And yes, we are blessed, lucky and fortunate to have been given the opportunity to experience and truly share love beyond compare.