REBEL WITH A CAUSE
The ramblings of a man touched by God

The Hardest Fight I Have Ever Fought


When I was a kid, fighting was a game.  I could talk my way out of a fight or talk myself into one. And it seemed I did one or the other quite frequently. 

As a teenager, I routed all that energy into sports and school.  What kid didn’t enjoy kicking some butt on the football field or basketball court?  Sometimes you won, and sometimes you lost.  But you left it all on the court. Sweat, blood and tears. 

Yet by far the greatest fight I have ever fought is the one I have been fighting since my daughter Lisa was born in 1983.  I am on the 26th year of fighting this fight – with no end in sight. Lisa was born profoundly mentally handicapped and today has an age equivalency of about 6 months to 1-1/2 years.  Her mom and I separated in 1995 with me having visitation every weekend.  In 2003, I took full custody of her since her mom could not care for her anymore.  Her mom – my high school sweetheart – passed away in 2004 at the age of 43. (Rest well Cindy – you would be pleased with how much Tina loves our Lisa)

There is nothing in a book, or training, or school that can prepare you for caring for a profoundly mentally disabled child.  You just do it.  Some days are good and other days are beyond bad emotionally, physically and mentally.

Yet there is something in battling for someone who is helpless that brings fulfillment to oneself.  This is not a pride thing.  It is a quest for justice.  A desire to right a wrong.  Protecting the innocent and helpless should be the ultimate definition of being a man.  In fact, I can honestly say that I became a man that July day in 2003 when I decided to forgo my dreams and goals and put my daughter’s needs before mine.  To put her mere existence and happiness before what I wanted in life. 

This is hard to explain but in a way, you begin living for two people.  Your life changes dramatically.  Your value system changes.  One tends to appreciate the simple things in life and understand that each day brings both blessings and trials.  You want justice – and that means that your life must now reflect both yourself and your child.  Some of you reading this will understand what I mean.

I have battled school districts for her rights to learn.  I have battled agencies for her rights for care assistance.  My only goal for her is to see her happy and for her to remain with me – never in a state institution. 

Our recent battle is with the Cabinet for Health and Family Services (CHFS) here in Kentucky.  An agency formed to help citizens like my Lisa.  Only their way of “helping” is to deny needed services and make you fight them in court.  We are now at the appeal stage for simple transportation to her day care center.  A mere scrap of a right.  Nothing really monetary but meaningful to help her gain some independence.  And the CHFS gets an attorney paid for by your tax dollars and mine.  How is this fair? Damn I hate attorneys.  Imagine all that schooling to go to a hearing and give legal reasons why your agency could deny services to someone who is defenseless.  I am sure her parents are very proud of how she turned out.  I just hope she doesn’t have kids.  To fight against disabled persons takes a cruel person.  And no heart or soul.

In our hearing on February 9, 2009, I have never witnessed such callous, cold-hearted and stupid people in my life.  I would rather have been facing a 1% MC club.  At least I know those guys have heart and passion. And they would never harm a helpless child.  There is a code in the biker community-you just don’t hurt a child.

Can you imagine going to work every day with the knowledge that your job is to deny services to the weakest of the weak of people?  How do you live with yourself?  How do you go home and hug your kids knowing that your stupid decisions may cause someone to go live in an institution and face abuse, rape and cruelty? 

I am fighting this battle against all odds of success with one exception: I refuse to give up.  This fight is no longer for Lisa – it is for every disabled citizen in this state who has been denied services by these heartless people. 

My life has changed much over the past 18 months.  I have moved to Kentucky, married an incredible woman named Tina, become step-dad to three beautiful girls (yeah THREE!) and entered another battle for the rights of those who cannot fight for themselves. 

Having a handicapped child is something I would not wish upon anyone.  I can be a tough SOB, but my heart blows apart when I think of my Lisa having to live without someone loving her and caring for her.  There is nothing more painful than for a parent to think of their child being in an institution. 

Soldiers go home after the war.  Warriors prepare for the next war.  This war for justice will never end because the supply of stupid, cold-hearted people working for the government is endless.

May God bless all of those who fight for the ones who cannot fight for themselves.

RiderforJC – A follower of Jesus Christ by the Grace of God

 

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