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, May 31, 2011

And, some days just make me happy...

I have found the peace after the past few weeks of ups and downs...
Kannon was having some tough allergies/behaviors and we had to up heave our "normal" routine and make some needed changes.
So, here we are.
Another day living with Autism, and it isn't terrible.
In fact, I have been smiling all day.
I feel great...renewed...strong.

I have found that acceptance in the bad times make the good times that much sweeter.
I accept the little bumps we go through every day with Autism, and I am getting better and better at going over them.
I still get sad and overwhelmed at times, but that is only because Autism will beat you to the line of "ready, set, go"....
Oh crap, I'm behind again...when did someone say go???
But, I eventually catch up...it makes me stronger.

I can look at my boy and see the beauty in all of this.
I can see the beautiful face I created, his warm eyes, brown hair, and perfect smile.
I can understand that this is the biggest lesson in both of our lives and we are doing it together.
Not a lot of people can say that.
I am doing everything step by step with Kannon...and because of that I can see all the small victories I may have missed if he was off without me.

I have found the beauty in managing my time and sticking to my rigid routine.
Kannon needs the routine, and it makes things easier for me because at least I know what I need to do each day.
The behaviors, mood, incidents are all variables and differ from day to day...but the routine is always underlying all of it.
There is comfort in that.

I have found the beauty in the ups and downs.
The highs and lows, the good times, and not so good times...the clarity with the fuzzy.
It is all part of my everyday life.
It is all o.k.

I am o.k.
I sometimes need to remind myself that I can go through the down times and I will come out of them even stronger...now that's a great thing.
Autism has strengthened my spirit, mind, and body.

And it does it every single day.
Not a lot of things can do that.

I am happy today because I know I can get through anything.

Because I have.

peace :)

Monday, May 23, 2011

Some days just make me sad

I try to stay away from addressing these moments.
But whether or not anyone ever reads this, it doesn't matter...it is truth.
It is my reality.

It makes me sad that when I say goodnight to Kannon he doesn't want me to just lay there and cuddle with him...talk to him...about his day, his dreams, his expectations.
Instead I usually am left talking AT him.
I think he knows all my dreams, hopes, questions...he has "heard" them all.
It makes me sad that I have to prompt "I Love You" to hear it back.
It makes me sad to have to think about the concept of if he understands what it all means.

I lay awake many nights and just think.
Think about it all.

The Why's.
The How's.
The What if's.


Why does this disorder happen to children.
Why so young.
Why at an age when they have no chance of understanding it all...maybe that's not a bad thing though.

How can I do this another day.
How can I put on my brave face and smile through the moments of pain.
How can I guarantee I will pull out of all this successfully.

What if Kannon was normal.
What if tomorrow he is able to talk to me...really talk to me.
What if they find a cure...will I be able to readjust my heart to that reality...

Why do I even bother with such questions?
How can I ever expect answers?
What if this is all the greatest gift and test of a lifetime and I was lucky enough to receive it?

The pain.
The truth.
The heart.

What really makes me sad is that I can't reach out to the rest of the people out there who know exactly what I am talking about.
And smile at you with tears in my eyes and just cry with you.

I am sad today.
I know there are others who are sad too.
And I am so sorry for that.

Basically I am left with this thought:

Why can't Autism tell me How I am going to get through today, and What If tomorrow doesn't bring the answers I hope so much for?

Can I do it all again...and again...and again...


Monday, May 16, 2011

The silence that follows you.

I had an introspective day yesterday.
Not that I don't mind them, but sometimes they get to be a little "heavy" and I don't like to go there.
I have been speaking of moments lately, and the past few weeks have been stuffed full of them for me...
Hence the introspection.

Mother's day came and went without much movement around here.
Not that I was/am feeling sorry for myself, but basically as a single mother raising 2 kids I wasn't at the spa getting a pedicure or massage.
Let me also clarify the single mother status...Kannon does have a father, he is a nice person that sees him every other weekend for 2 days, and that is that. He lives about an hour away, so there are no daily visits or surprise visits. Just the scheduled weekend time...period. At one point he referred to him spending time with his children as "babysitting", so that might be a good indicator to his personality.
I will say that the divorce has made him a better father though. He has had to accept things that he didn't before, and he is much more patient and compassionate with Kannon.
I guess I say single mother, because that is quite frankly how I feel. I don't, and did not receive much emotional or practical support from his father in regards to Kannon's diagnosis...any services or support Kannon does and has received is due to my resourcefulness and fighting. Sure, he pays child support so that Kannon can eat and have new clothes or shoes when he needs them, so yes it could be way worse...but do I consider him an equal parent in all of this...no I do not.
Unfortunately some, hell most of us are not equipped to handle what Autism will throw at you.
It absolutely knocks you on your ass and quite frankly takes a lot of time to adjust to...if ever.
So, I am not bagging on Kannon's dad.
He did the best he could, and Kannon adores him...enough said.

But now, all of my days are now spent alone with Kannon and Kalena.
And, yes it is very lonely at times.
I do have a very kind, supportive boyfriend that has been great with my kids, but there is an underlying knowledge and truth that these are not his children.
I have made it clear that they already have a father, and all I would like for him to be to my children is their friend...and he is definitely that if not much more to them.
Honestly, he has been my saving grace in many times and he has been an amazing friend to me as well.
He is scared of all of this too though...and I don't blame him one bit.
Sure it stings, but the plain fact that someone doesn't want to jump in head first into a situation that is so unstable and unknown is completely valid.
When we talk about our future together, it is never really discussed at length because of Kannon and his needs, situation, etc.
Basically he does not know whether or not he will be here in the future because Kannon's situation scares him.
I understand. It scares me too...
So, coming full circle it all leaves me with a very empty feeling at times.

Will I be 70 years old, walking hand in hand with my adult son back to an empty house with just him and I?
Will there be anyone there for me?
I know I will always have Kannon, god willing, and I am thankful for the life friend I have within him.
But will I have someone there to cry to, to talk with, laugh with...grow old with as my equal?
I don't know...I just don't know if it will be.

I do not feel sorry for myself, never will.
I love the moments I have with Kannon.
I love going on walks with him hand in hand, looking around at all the beautiful things out in the world.
I even love talking to him without getting a response...he just looks up at me with those eyes and smiles.
He has absolutely become a fixture in my life that needs me beyond anything.
He needs my time, my love, my fight, my compassion, my heart, and my hand to hold to keep his feet on the ground...

As Kannon's mother I may never have someone to grow old with besides him.
I would like to think I have accepted that.
There was a moment last week as Kannon and I were walking to the park I saw an old couple hand in hand walking, and I teared up.
Maybe out of missing my grandparents, maybe out of the joy of seeing such sweet people enjoying the day...
Or maybe it was because deep down something inside me knew it would not be me.

Kannon will need me forever, I mean really need me.
These are some of the things a lot of people don't understand about living with Autism, the emotional toll, the absolute necessity to put this child first in EVERY situation, the financial stresses, it is all very real...and it all takes a toll on any relationship in your life.

And my reality I face is that in 5 years I may still have to dress Kannon, bathe him, redirect his physical ticks, calm him down when there are loud noises that scare him, hold his hand when we go out in public...and right now because he is a little guy it is cute and sweet and socially acceptable.
But what about in 10 years?
20 years?
Will I always be his only true friend...will there ever be someone else to walk hand in hand with him and smile and truly enjoy the day?
Will either one of us find another person to hold our hand?

Overwhelming, yes.
The truth?
I just don't know.

My heart can only continue to have hope...for Kannon and myself.
And the silence...it will follow me for as long as Autism continues to follow Kannon.


Wednesday, May 11, 2011

Recognizing a moment

I was late.
I am usually the mom who is 15 minutes early sitting on the red wall waiting for Kannon to get out of school...
I love watching him come around the corner in the distance and look for me, then after he finds me, smiles, puts his head down and shuffles faster to me...
I know I anticipate him more than he does me.
I don't care though. It's nice to see any sort of reaction towards me.
It makes me feel good to know that he looks for me at all...that he cares enough to look.
As mothers in our situation, we will take these little moments any day.
I always give him the biggest hug possible when he walks up to me, then off we go hand in hand to the car for our daily lunch date, therapy, etc...

Last week I was late in picking him up.
Only 5 minutes, but I will never forget his face as I walked down the sidewalk towards the wall where he was standing with his school aide.
He was looking around frantically, and his legs rocking back and forth...he does this when he is nervous...which is a rarity for him.
Instead of walking faster, I slowed down...I wanted to see this precious angel of mine miss me.
Strange maybe, but I sometimes wonder if he does miss me when I'm not there.
Lord knows I have spent 99% of the past 7 years right by his side.
I never know if he appreciates me as much as I think he does.
I have no clue to the extent of his love for me...I never know if when he tells me he loves me if he does it out of echoing what I say, or if he feels those words as much as I hang on to them when he says them to me.

But right at that moment I saw a glimpse into him that I rarely get to see.
I saw raw emotion, not coached or prompted.
I saw love.
He was searching for me.

I knew right then how much he appreciates all I do for him.
I knew that he wanted to run into my arms and tell me he loved me...
I knew for that brief minute that my son truly, emotionally needed me.

It was written all over his face.
The familiarity of my face, of me is what he was searching for...and that is something...something wonderful.

After I came around the corner, he saw me, relaxed for a second, then immediately his body froze back up to his Autistic "form"...no longer was the look of longing, emotional fluidity written all over that beautiful face of his.
He started flapping his hands and already was perseverating on what we were going to eat.
He was right back to what his body "knows" what to do.

Interesting...since we fight so hard every day to help him break free of those physical ticks.
Interesting that when he felt most vulnerable and scared he turned into a "normal" child...at least in the physical aesthetic.
The brain is a tricky thing...so is Autism.

I think for that moment though I tricked Autism...
So take that.
I saw what my son is truly capable of.

That is what I will continue to fight for .
For him.
For the possibility that someday he can let go of it all and just love.

Until then, I will love him more than he can understand.
I will love him more than I receive, not because he's not capable of giving...I saw it with my own eyes the capability of his heart.
My love and hope for this child to break through to himself will keep me going...
It is these small glimpses into another truth that gives me hope for Kannon, and for our future.

Who knows if he will ever "recover"
It is every parents hope that their child with Autism can break free of it all...
Until then we as parents have to remind ourselves of these ever so small moments.
There is clarity within, there is a calm to the storm.

And just maybe I will be late a little more often :)


Wednesday, May 4, 2011

Moments from my gallery

Moments are just that.
Here one minute, then gone...

I think we dismiss many moments too quickly.
The quick smiles, the calm before the storm, complete silence, a touch of the hand...
They go on and on.
Perhaps we can define moments by saying they are those times our mind takes a mental photograph and stores it away for times we need to be reminded of something...
Moments of love, frustration, hope, pain, joy.
They all count...they all matter.

I was reminded yesterday of some moments I put away.
My father passed away 4 years ago, yesterday was the anniversary of his passing.

I was reminded of the plane ride I took last minute when I got the phone call from my sister telling me he had slipped into a coma.
The smells of the airport, the material of the airplane seats...normally something I recognize then dismiss.
The people around me...rushing about to get wherever it is they are going.
I wanted to crawl inside myself and just cry...I wanted to make time stop.
I knew I was going to see my father for the last time...I knew when I got back on that plane it would be without a father in my life.
I remember what the man sitting on the plane next to me looked like, I remember the flight attendants name that brought us drinks, I even remember the ring tone of the woman behind me when her phone rang minutes after we landed.

I remember walking into the nursing home and the looks of the staff as they watched me walk down that long hall towards my father's room.
They all knew what was going on.
They all knew he was dying and that I was there to say goodbye.

What I remember most though was after he passed away before my mother, sister and I, was the silence.
Complete silence.
No more listening for him to take his last breath. No more suffering, no more whispers to him telling him to just let go...to be at peace.
I remember watching my mother lay on his chest...I can't imagine what that moment meant to her.

Then one of the most beautiful moments in my life came.
Without going on too much about him and his condition(s), my father suffered an accident 13 years prior to all of this that left him partially handicapped.
He never regained full use of his hands...they always looked cramped up, bent at the knuckles.
My point is, he could never hold our hands...he couldn't reach out and touch our faces anymore like he loved doing...he loved all us girls so much, and he used to always cup my face with his hands and just look at me sometimes...and smile.
He couldn't do that after his accident, so the last time I felt my dad's hands on my face was over a decade ago.

After my father passed, we all took our time with him alone.
I don't know what my sister or mother did, as that was their personal moment.
All I know is what I did.

I sat down next to him, took his soft hand in mine and just held his hand.
His hands were no longer cramped...there was no more pain within them.
I closed my eyes and imagined he was still there for just a moment...god I missed him already.
I then laid my head down next to his side and put my face in his hand...I closed my eyes and just let myself cry over all of this.
I took my mental photographs of this moment.
Then I tucked them away.

These are moments I put away deep inside my heart.
I don't let them out very often.
I do cherish them so much though, and love that they are there.
Some may find them grim, or sad, or strange.

That's what makes moments so very important though...
They are yours, and for your interpretation and heart only.
Sometimes it's good to share them in hopes of helping others...inspiring hope or love.
They are emotional learning tools for helping our heart grow and change.

I do the same with Kannon.
I take mental pictures of his moments every day.
Then when I have time to reflect on them I can just sit and be still with my own thoughts...
With my own pictures, to do what I want with them.
To smile, laugh, reflect, piece apart, find peace with...
But never to bring anger, or resentment...for those moments should be discarded the moment they feel that way to you.

I like to think of it as a beautiful art gallery of pictures within me that I can pick and choose which ones my heart wants to reflect on for that day...or that moment.
And that is the key, it is My gallery of artwork that my life created for me.
I will never stop taking mental pictures, no matter how sad or painful they may seem...because you just don't know what you may learn from them.
This is how I grow.
This is how I find peace and move forward.
This is also why I share.

peace :)