The truth about Autism

10 years ago this past Thursday, D was born.  With his birth brought for the first time into my life vocabulary the word "autism".  I can honestly say he has challenged me intellectually, physically and emotionally.

Starting this blog five years ago - it was a tribute to David as well as an outlet for me, his Dad.  I re-read posts from five years ago and I invite you to read the post I made on his fifth birthday.  Funny, those same challenges and fears from five years ago - hold true for me today.  I am challenged like never before to help my son lead his life abudantly.

A colleague and friend shared with me the Boston Globe article - "The truth about Autism".

As Gareth Cook writes, "THERE IS, living among us, a group of people with remarkable intellectual gifts."  

Yes there is....and I am blessed to know him.

Occupy Wall Street

I haven't been home in 5 days and contrary to popular rumors, JohnnyO is not hunkered down at the Occupy Wall Street protests.  No power in Newtown has left us homeless for a the good part of a week.  I am not complaining mind you - you learn a little bit about yourself and your family in times of turmoil. 

For me, it is the handling of stress.  I believe I handle it well, take it in stride, make lemonade out of lemons.  When your Dad dies during your senior year of high school - you know where your priorities are and how you will live your life.

However for Dads overall - this can be a time of pressure.  Figuring out where to live, what is the next move, buy a generator, electrician, will the pipes freeze, will my home be vandalized, what about that tree in my front yard, is there basketball practice this weekend and how will I get to work (showered and shaved).

I feel I have to lead this team - this family team.  I have to be the rudder to guide this ship.  I am the straw that stirs the drink (thank you Reggie Jackson).  I have to have a level head, heart and soul.  So there is that pressure to keep it together in times of trouble.  I am striving on doing that for the kids.  I hope they enjoy this time together sleeping at in-laws.

I do a good job of hiding the inner mind turmoil.  I have to do better on exposing my struggles knowing that this is what all Dads go through.  Managing their team through a long season......wins and losses.  A game or battle more important than Wall Street....if you can believe that.

My Smooka

My Smooka is five years old today.
Not sure when, how, or why I came up with this nickname for my baby.  However, the term is found in the urban directory so it can't be all bad? :-)

It's a bitter sweet day.....I love the joy, passion, enthusiasm, and light she brings to her life (and mine).  But there is a sense of loss.  For me, 5 years old is a milestone of sorts - a new beginning or a new stage for her (starting school) and for me (losing my baby).

So I will celebrate her life (probably a trip to Friendlys is in order) and I will reflect on what this day means for me in my fatherhood road.

A Letter to Ciara

Today is my niece Ciara's birthday. Had she lived, she would be 1.

I vividly remember spending Easter Sunday in her room. This was two days before she died. While staring into her eyes and holding her hands, I kept whispering to her,
"I'm right here".

She was sick and battling so I don't know if she heard me or felt me. But I felt her and connected with her.

I find solace in reading "A Letter to Ciara" written by my brother in law to his daughter.

In reading this letter for him during Ciara's Eulogy, the below part is what I most struggled with:

"Throughout the high and lows I want you to know you were never alone.
We did everything good and bad together as a family with God guiding us along the way.
As I continue on in the race I want to thank you for teaching me to enjoy the simple things in life."
- excerpt from a Letter to Ciara (MV)

Thank you Ciara for teaching me about the simple things. You changed my life. You inspire me. I'm still right here, just missing you.

Fathers Day Blues

Fathers Day is a day to celebrate Fatherhood (from a non Dad perspective).
However If you are a Dad, Fathers Day has a different lens.
Today we celebrate, embrace and reminisce about our children.

There are challenges of being a Dad (JohnnyO vs the Lawn Mower)
There are celebrations like D winning 3rd place in his karate competition.
There are milestones like playing golf with JP for the first time today.
We had a walk to the lake today, a bike ride in the neighborhood and a game of Jenga with my little 4 yr old smooka. Not a bad day pre fathers day.

But I realized something today. I am sad. I have been sad since Jan 1. That date was a mark to let my niece Ciara live into 2011. She made it, but not for long.

I miss Ciara. I miss my Dad. Losing my Dad when I was 17 really hurt, I can never explain that pain. Losing Ciara for me was different. I feel extreme sadness.

Ciara's Dad, my brother in law, has been an inspiration for me this past year. He is a living example of how a Dad loves his child, unconditionally.

Don't waste an opportunity. Savor the good times. Earn your stripes during the bad times. I know starting today my fatherhood matters more than ever.

Facing Fear: Zac Smith Story

Funny on a day of new life (New Years Day), this video struck a chord with me. Maybe it was because he was a Dad with small kids. Maybe because he faced death at such a young age (33). Maybe with the start of a new year, it is a good reminder for me to savor every moment with my children. My mind has been consumed in the past months on another child in my life, my 6 month old niece. I am honored to look into her glorious eyes and witness her cheerful smile. I had the privilege to feed her (before she had a feeding tube) and hold her for an entire afternoon. This was one of the most wonderful yet difficult things I have ever done.

This video resonates with me by how Zac handled impending death. I wonder how my niece sees the world. I wonder how my Dad looked at the world prior to his death. I wonder if I could be strong in the face of death. Can I still give Glory to God through word and action? Could I be that strong?

Thank you God for giving me my niece. She is a living testimony (like Zac) that there is precious life through suffering.