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Karen Lynn Vidra, The Texas Tornado

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Waiting For A Smile. ...: Special Needs Parenting 101. (Part One)
By Karen Lynn Vidra, The Texas Tornado
Thursday, July 26, 2012

Rated "G" by the Author.

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A little boy battles leukodystrophy. This is his story, as told by his brave mother.

Image (c) 2012, by Karla Dorman.

Just got Travis's nutritional suppliment ready for his nightly feeding; his pump will run all night long, delivering precious nutrition and protein to his desiccated body as he sleeps through the night.  Also got his medications ready to inject into his central line and will make sure his oxygen tubing is not kinked and that the flow rate is at the right setting.

Such as life.  This is how it is for our three year old son, Travis Parker.  It is not easy, but it is necessary to keep him alive.  Somehow, God has given us the strength and grace to carry on through this uncertain disease that has consumed not only our child, but Mike's and my lives as well.  If it were not for God's mercy, Travis would not be here.  He must have a plan and a purpose for Travis; there is no other way I can explain it except to trust in Him, fully and completely, especially on those dark, uncertain days.

When I had Travis three years ago, our lives were full of hope and promise.  Mike figured out that Travis would be a huge sports fanatic like him; as for me, I longed to hold him on my lap and read him stories or sing silly songs to make him laugh.  Yet Travis never seemed to respond: somehow he seemed distant, even delayed somehow.  He would just look at us with those big, wide, knowing steel blue eyes of his. 

At his three month old well baby clinic, doctors seemed concerned that Travis wasn't "developmentally on target": other children his age were holding their heads up, smiling, even interacting; Travis, meanwhile, would just lie there, not doing anything except blinking his eyes, as if to try to figure out who we, these two big people who had invaded his life, were.

The doctor took blood samples (which our son did NOT appreciate; oh, how he howled!  And oh, how we cried!); he suspected "something" was going on with Travis.  We prayed that this wasn't the case, but maybe there would be some answers as to why he was not developing as fast as his peers.  We took our son home and prayed as we fearfully waited for the results, expecting the worst, but hoping for the best.

Three weeks later, the phone rang.  It was the doctor.  He did not sound hopeful.  At the tone of his voice, our world seemed to slow down to a crawl; we did not know what to expect.  He suggested that we bring Travis in and come in, where he would then discuss the results of the testing done on Travis.

We went, a sinking feeling in our hearts; yet we never in our wildest imagination realized just how bad the news would be.  Travis lay in my arms, still blinking those incredibly huge eyes, searching our faces.  

At the doctor's office, he was frank as he discussed the findings.  It turned out that Travis had a fatal genetic disease known as "Krabbe Leukodystrophy"; he would not live to see his second birthday.  There was no treatment or cure: all we could basically do was try to make our child as comfortable as possible and learn to anticipate worsening of the symptoms.  He would eventually end up losing his sight, hearing, and speech; he would never walk.  

We thought this had to have been a mistake.  How did our son end up with a genetic condition?  We had never even heard of Krabbe Leukodystrophy!  How could we possibly have been carriers to this terrible disease?  Why our child?? Why not someone else's child?  Why were we chosen to deal with this  ... this ... calamity??  Thoughts ricocheted off my brain in reckless abandon; I wanted nothing more than to smack the doctor and call him every dirty name in the book for bringing us into this nightmare!

Instead of planning our son's first birthday, we were looking into funeral arrangements.  We were looking for a cemetary to bury our son that was within our budget.  We were looking at spending our years without a child who would never even get to grow up.  His life was over before it truly ever began.

We went into hiding.  We did not want to talk to anybody, including God.  We closed the door on God; what kind of God was He to allow such a hellish fate on our child?  It was a terrible, traumatic time for us.

Eventually, we got a  hold of ourselves and learned that we could give our son a life, even though it would probably be brief.  Our son turned one, then two, then three.  By now he was increasingly dependent on us, but he was ALIVE.  It was only by God's plan that He was.  He somehow had a purpose for Travis ... and for us; we just had to find out what it was.

~To be continued.~ 

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Reviewed by Michelle Kidwell Power In The Pen 7/26/2012
I can not even begin to imagine, great story here, Karen, thank you for sharing
In Christs Love
Reviewed by Karla Dorman, The StormSpinner 7/26/2012
Sadness in these lines, Karen ... well done. Don't know how parents with children who have significant, even fatal, diseases do it. They are way braver and stronger than I.

(((HUGS))) and love, Karla. :(

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Karen Lynn Vidra, The Texas Tornado

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