Poem

You might think that you know me
But you don't
That you will get what I'm doing 
But you won't
My shoes have many miles
And they've seen a hundred trials
But no one seems to see the greatest point

You might think that you see me
It's not true
I only wish that I could
Just relate to you
Nobody is to blame
We just are not the same
I'm not the person that you thought you knew

You say you understand
And that is great
But the things I do
You just cannot relate
I live a very different way
Which consumes my every day
It simply is a caregivers fate

I will do my best and try
To be your friend
But every day I just don't
Know how it all will end
So much I can't control
It all just takes its toll
Theres nothing here that I can depend

Blog Anniversary

Two years ago today I started this blog.  Writing has always been a source of comfort for me.  It allows me to sort things out and streamline some of my thinking.  I've conditioned myself for so long to think fast and yet see things from as many angles as possible.  When I write it allows me to slow things down and put thoughts into perspective.  Sometimes it allows me to express feelings that are too difficult to say any other way.  Writing has been a tremendous help to me getting through a lot of difficult times in my life.

Writing isn't for everyone.  Each person has their own individual outlet device.  Being a caregiver does not mean giving that up.  In fact, it should actually become more important.  What I write and the way I write reflects me as an individual.  It is unique to me.  No matter how many writers put pen to paper, nobody will write exactly the way I do.  This goes for any such outlet, it is a reflection of the individual that is theirs and theirs alone.

I think of my friend Tom who did not grow up as a painter.  It was something that he discovered during a portion of his life when he was ready for it.  Now it is not only an amazing talent that he has, but it is a driving passion in his life.  And even better still, it is the constant love in his life that is there for him no matter what else is happening in his life.  I have never seen him paint a picture, but I have seen him paint beautiful windows into the heart of life itself.  Its like when you listen to a piece of music, close your eyes, and feel it transport you to another place.  Perhaps the writing, or painting, or music takes you back to childhood memories, or to a peaceful place that you have never been and yet can vividly imagine.  

Being a caregiver is difficult.  Unless you are careful you can become so consumed with the other person that these personal abilities begin to take a back seat.  Before long, they could be placed on the shelf never to be used again.  If this happens, you will feel even further away from your own self than ever before.  You cannot lose sight of your own self.

Today, think about what it is you LIKE to do.  Even if you aren't a caregiver and you are reading this, think about what makes you happy.  You don't have to be good at it....being good has nothing to do with anything...you just have to like it.  It can be reading, crosswords, jogging, drawing.  Activities like these have been proven to be healthy for the brain and help reduce the effects of depression.  For caregivers it is SO IMPORTANT to have an activity reserved just for them.  

Remember that each and every day is a gift.  Even difficult days are a gift.  Those gifts are very limited, and in fact we don't ever know how many more we will have.  We have to find wonderful things in each of them.  

Be well and God bless.   Tom 

A Message from Samantha

Today Tyler's sister Samantha would like to write a blog entry.  As an 8-year-old this will be her first-ever foray into the world of public writing.  I told her that she should write what its like to have Tyler as her big brother....and how she feels about him:

hi my name is Samantha as Tylers sister I feel a little sad because I wanted to do many regular things with him but in the house I had to hide from him if he was in a bad mood and if he was where I was I would have to hide or move fast and I was very sad when he would throw one of his dvd player but dad would try to give him a stuffed animal before he would throw a dvd player on to the wall but I am happy that I have a big brother

I think there is a lot to learn by what she typed here.  One of her most vivid memories of him is needing to keep a safe distance when he would get upset.  She remembers all of the times he would slam something with his portable DVD players to convey his frustrations.  It wasn't easy to be Tyler's little sister.  But even despite all of that, she is sad that she can't do more "regular things" with him, and she ends by expressing that she is happy to have a big brother.

Other than forgetting that at some point you have to end a sentence with a period (lol), I thought she did a nice job.  She asked me if people all over the world would be able to read her first ever blog entry!  Absolutely!

Fortunately I believe Sam will continue to adapt to the life changes she has experienced.  She is doing well in school, just completed her participation in a competitive swim club, and she is sporting colorful new braces so that her teeth will become beautiful as she gets older. As with any 8-year-old she has growing pains, but overall she is a good girl with a bright future.  

I think if her big brother knew all of the wonderful things about her he would be very proud to have her as his little sister.

Be well and God bless.   Tom

Beliefs

One of the most difficult struggles for me is understanding why Tyler has been brought into this world to experience the hardships that he does.  He will never know what its like to fall in love, own a house, have children, or hold a job.  In fact, most of what he know is an inner turmoil that mixes with fear and uncertainty.  He isn't able to talk,or read, or understand much of what happens around him.  After all, we probably only get ONE life here on earth, so why is his laid in ruin by autism?  And lets not stop there, but to ask why are children brought into this world in oppressed countries only to suffer and die from famine or disease?  Why are so many children lost to child slavery?  I struggle with this terribly.

Its hard to figure out where my hopes end and where true belief begins.  I want to believe that when Tyler passes from this life he will be fully restored in heaven.  I want to believe that he will be honored and respected, as will all of the children who suffered in this mortal life.  I want to believe that he will inherit a throne of gold and we will spend of all our eternity taking walks together and sharing the stories we hadn't gotten to share on earth.  

Is this what will really happen or is this simply something I reassure myself of so that I can sleep at night?  I know a guy who's dog died and now he believes his spirit visits him at night!  Now I'm pretty sure old fido is doing no better than to rot in the back yard somewhere, but thinking this makes him believe that the dog hasn't truly left him.  As long as the "ghost" is hanging around, he isn't really completely gone.  I see it as denial more than anything.  

Its not that I don't want to be a strong person with strong faith.  But I have experienced many years of harsh reality which makes me skeptical of my own beliefs.  It blurs the lines between faith and fantasy.

So what is the answer?  I suppose we won't know until we get there.  Tyler and all of our children deserve to inherit the earth.  They deserve to be kings and queens for all of the trials they have endured.  I wish it to be so.

Be well and God bless.    Tom

Reaching 55,000 Views

I am honored to report that today "My Walk With Tyler" has reached 55,000 views.  What has been even more of an honor is how it has allowed me to share Tyler's story with so many people, often people that I did not previously know.

Tyler is a unique and wonderful individual.  I would never claim to understand WHY any of us are placed on this earth, much less a young man who has had to overcome all of the things he has been faced with it.  But I do know that while he has been here he has inspired other people.  He has enriched the lives of many people.  He has taught important lessons to all of those that he has touched.

He has shown me the best of who I am, and sometimes the worst, but to never simply settle for either one.  I must always strive to think about my effect on other people, and to cherish and protect the feelings of those around me.  I must remember that I am my brother's keeper.  At work when I teach employees about safety, I explain to them how important it is to protect their health and the health of those around them.  I talk about how if every one of us looks out for the person beside them, we would all be safer and well taken care of. 

He has shown me that I don't need a fancy house, or a fast car, or fancy clothes.  I don't need 1000 Facebook friends.  I need the love of my family and a few close friends.  I need to know that we are all loved, respected, and secure. 

He has shown me so much about be courageous.  That courage is about facing the unknown with confidence.  Courage is about beating the odds and never looking back.  Courage is moving forward even when you fall down.  Maybe the greatest example of courage that Tyler has taught me is how to remain smiling, even when things are hard.

It also blows me away how far and wide his story has reached.  I have had the opportunity to travel much of the US and somehow his story comes up everywhere I go.  This blog has reached many, many countries on nearly every continent. 

Tyler is a gift.  He is a gift that I am so proud to have shared 55,000 times to people all over the world.  I believe that he has changed people's lives.  For that he will someday inherit a throne of gold.

Be well and God bless.    Tom