A Southerner and a Cause-

There are two types of people who are all about their "Cause."  The first group of people are Southerners.  We are raised on stories of "The Lost Cause."  Stories of our brave brothers in arms who went off to fight the tyranny of the Yankee Government.  We know our history better than those who teach it to us, we never let it die, and we comfort our crying babies with songs about Dixie, and the Bonnie Blue Flag (hey Caroline says it sounds like a pirate song).  When we talk about "The War" it is only about a time period from 1861-1865.  Not the Revolution, not WWI, WWII or any other conflict. We name our boys names like Jackson, Davis, Forrest, and our girls Savannah, Georgia (pronounced Jo-Jah), Dixie, and Caroline. Us Southerners love our Lost Cause. 

The second group of people that are wrapped up in their cause are Catholics.  You have a Saint dedicated to every cause out there including one (St. Jude) dedicated to lost causes. I suppose that is a Southerners dream Saint.  Every thing us Catholics do, we do for a cause.  I ran in a race on Saturday and it was for the St. Vincent DePaul Society.  We eat. sleep, breathe, other peoples struggles.  In my opinion that is one of those things that makes my religion great.    I guess being a Southern Catholic, I had no choice.  I am a sucker for a cause.  Every time someone comes to the door trying to sell something for their trip to DC, I have to at least listen to their pitch.

I have debated on writing this blog for a long time- Im not sure I would be able to do it and get across the correct point. I wasn't sure I would have the "courage," to actually write about it.  I don't pretend to understand the struggles they go through and I hope this comes across correctly.  I do so write this blog ONLY to bring awareness to something a few years ago I knew very little about.  It is scary to see on regular basis but through it I can find some remarkable slithers of beauty and strength.  I see it though the carefree eyes of a child and through the resolute look that only a parent can give.

My neighbors have two grandchildren, Mason and Sadie.  Reagan, Caroline, and Baylor Grace, all love it when they come and visit next door.  They get excited when they see their mothers SUV outside and they play, and play, and play together outside.  From a distance it appears as though you have 5 kids being kids, the most basic desire for any parent.  Up close is a different story.  Both Mason and Sadie are inflicted with a disease called A-T.  I don't even know the actual name, and like mentioned above, I didn't know anything about it before I moved to Lexington.  I encourage you to go hear to read more about A-T.  Essentially it is a disease that effects the motor function of a child and impedes their movement and speech first.  It then breaks down their immune system and many of the kids end up with some form of Cancer.  It is ultimately a dehibilitating disease- that is sort of like Lou Gehrig's disease for children.  And like ALS, there is only one ending.  We all know we are on borrowed time but we almost never think about it.  If someone asked us "would you want to know the day you are going to die?" most would decline.  There will always be a tomorrow, in our minds there will always be another day.  Another day to tell that person you love them, you are proud of them, or the hardest one- you are sorry.  We know our days are numbered but we think and we act as if they are unlimited.  Unfortunately for kids with A-T, those days are numbered in the cruelest way.  Through twitter, facebook, and her blog, I have become aware of the struggles their Mom faces through her words.  I hurt so much for them and admire the strength that they show.  I haven't been able to shake the anger and the hurt I sometimes feel inside about the situation.  While running, a sleepless night, or on a long drive, I often find my thoughts wondering to those kids and their family.  I seem to walk a tight rope between being thankful for the health of your own kids, pissed because of their kid's health, and a feeling of total helplessness.  I can only imagine what their Mom and Dad go through.   

Anyway, I have learned that kids will say anything.  Reagan, in front of everyone, has told someone that he had a big belly.  Caroline, openly asked why a female passer by had a mustache?  You never really know what will come out of their mouth.  To the girls credit, they have never said a word about Mason and Sadie's disability, and never once on the side asked any questions to us.  The other day, Reagan was trying to teach Mason how to play catch.  They simply treat them as they would one of their own. Im so fricking proud of my girls for looking past any imperfections and in a sense, realizing we all have them.

But I struggle with the ultimate fate of those two kids- and someday having to explain that fate to my girls.  I can't imagine how hard that will be when that day comes, and to think that having to explain that to my girls is the easier parental role to have to play out.  I'm not sure I can do much to help, no matter how bad I want to.  So, I write this today to hopefully make you more aware of the disease.  I think more than anything Mason and Sadie's Mom and Dad don't want sympathy- just awareness.   If you're on Facebook, I encourage to visit their page at https://www.facebook.com/#!/pages/A-T-Lexington-Team-Mason-Sadie/213756251987915 to find out more.  The other day- one spent around taking both her kids for another day at UK hospital, Kerri posted this poem (below).  I think most parents, in their heart of hearts, believe this will happen for their kids.... while some parents can only wish.  I pray to God their wish comes true.

Each night I tell the Lord above

I wish for you to experience true love

To marry and have your own little ones

To go to college and maybe have too much fun

To feel the wind upon your face

After completing your first marathon race

To see you walk down the aisle

Nervous but happy with a great big smile

To get to drive a big truck or small car

With the open road ahead to go far

I wish for you to have your voice be heard

For people to always have a kind word

I wish for you to reach for your dreams

Whether big or small, having fun in between

I wish for you to hold your head high

To believe in  yourself, to always try

I wish for you a long and  happy life

Full of possibilities and free of strife

So please Lord hear my wishes today

What the future holds I cannot say

A dream is a wish your heart makes

My heart wishes these dreams will take