Join (Free!) | Login  

     Popular! Books, Stories, Articles, Poetry
   Services MarketPlace (Free to post!)
Where Authors and Readers come together!


Featured Authors:  Cheryl Wright, iFrederick Brooke, iPeter Ralph, iChristina Neely, iDiana Perkins, iBilly Allmon, iDerek Flower, i

  Home > Health/Wellness > Stories
Popular: Books, Stories, Articles, Poetry     

Karen Lynn Vidra, The Texas Tornado

· Become a Fan
· Contact me
· Sponsor Me!
· Success story
· Books
· Articles
· Poetry
· News
· Stories
· Blog
· 7,838 Titles
· 41,508 Reviews
· Save to My Library
· Share with Friends!
Member Since: Before 2003

Karen Lynn Vidra, The Texas Tornado, click here to update your pages on AuthorsDen.

Featured Book
Woodworking Business: Start Quickly and Operate Successfully
by Bill Benitez

Complete instructions for starting and operating a financially successful woodworking business...  
BookAds by Silver
Gold and Platinum Members

Featured Book
Speak Without Fear
by Will Clark

A self-help guide for any life-time stutterer who really wants to quit. ..  
BookAds by Silver
Gold and Platinum Members

Share    Print  Save   Become a Fan

Nashi's Story, Part Three: Living With Canavan Disease.
By Karen Lynn Vidra, The Texas Tornado
Saturday, January 12, 2008

Rated "G" by the Author.

Share this with your friends on FaceBook

Terri, Nashi's mother, writes more about her special child, and the latest medical crisis that has infiltrated their lives.

This is Terri. Terri Ben Ami, Nashi Danielle's mother.

I wrote in here several times before, explaining the special situations surrounding our oldest child, Nashi Danielle, who is eight.

Nashi Danielle, as you know, is severely physically and mentally handicapped. She was born seemingly healthy; however at the age of six months, she started exhibiting subtile signs, signs that told us something was wrong with her. As she neared her first birthday, after undergoing an exhaustive series of tests and procedures, Nashi was discovered to have Canavan disease, which is a neurodegenerative disease that causes increasing disability and deterioation in physical/mental/cognitive abilities.

It usually kills its victims before they reach their fifth birthday; however, some children with Canavan's disease have been known to live to their teens, even to their twenties.

At the age of eight, Nashi is unable to walk (when up, she sits in a wheelchair), is blind, cannot talk, and is fed by a gastrostomy tube that's been surgically implanted in her belly. She can't chew or swallow; so she eats in this way, every five hours or so.

In addition, Nashi is incapable of going to the bathroom on her own. She wears diapers, and she needs to be fed, dressed, bathed, taken care of as if she were an infant. She needs total medical care, around the clock.

Having a child like Nashi has been a huge strain on our family. Our littler child, Hyman (he's six) often voices his displeasure at having an older sister who cannot play or run around like he can; and due to all the attention that she gets, he, naturally, gets jealous; he often says he hates her, wishes that she was dead, which stabs our hearts.

We try to spend as much time with our younger child, but invariably it isn't long before our attention is diverted back to the older child--and it is the older child who needs more care; Hyman has been forced to become the big brother to his sister, even though, in real life, he's the younger one. Hyman's also the mature one, the one who can be expected to help out whenever it is needed--and then we feel guilty because we are robbing our son out of a normal childhood.

A six-year-old shouldn't have to be knowledgeable about things like tube feedings, or how to change a diaper, or how to call for an ambulance when his sister falls ill; yet this is his life, and he often resents it. We do too, because it is something that is totally beyond our control, and we feel like terrible parents.

Like now, as an example. I sit here at Nashi's bedside here at Nashville Memorial Hospital, where she is currently in the Pediatric Intensive Care unit, fighting off yet another round of pneumonia. She is doing a little better, I am glad to say, but she is still plenty enough sick, and it will be a while before she is back to where she was. Her lungs are weak, and right now they have her knocked out, so she doesn't pull out the respirator tube that's in her throat, or the other tubes that's invaded her body.

Nashi's hooked up to a bank of monitors and machines; these record her vital signs, let us know how she is doing, and it bothers me to see her lying so still, unable to move, blink, hear, see, communicate. It's as though she is a living corpse, and it is very unsettling.

Unfortunately, this isn't the first time we've been down this road. Because of her inability to fight off infection, any little thing can turn into a major production for a child like Nashi. Who knows what the next time will bring; in fact, the next time could be the very last time we see our daughter alive--and then what are we going to do??

Even with all her medical problems, her disabilities, we cannot imagine our world without Nashi. She's brought us nothing but joy (and yes, even heartbreak), and every day that she's with us can be counted on as yet another God-given miracle.

Hopefully the next time I write will be better news. Lord, I hope so; these hospital couches aren't the most comfortable things to sleep on, and I hate worrying about whether Nashi is going to have another breathing episode, another "Code: Blue"!!

Will write in here again soon; stay tuned~

~Terri Ben Ami, Nashi's mom. :(

Want to review or comment on this short story?
Click here to login!

Need a FREE Reader Membership?
Click here for your Membership!

Reviewed by Georg Mateos 1/13/2008
The tug of war dilema how much time to give the ill one agains how much time to the healthy one, and cope with the heart ache of it all.
Reviewed by Michelle Kidwell Power In The Pen 1/12/2008
It is hard for an able bodies sibling who has a disabled brother or sister, especially as severly disabled as Nashi, I have read several books on the subject of how sibling cope with having a disabed brother or sister, it is hard on them and hard on the disabled child as well, this is a great thought provoking write
God Bless
Reviewed by Carole Mathys 1/12/2008
I can not imagine the stress and heartache that familes of special needs children deal with everyday...excellent, if sad story line Karen...

love, Carole~
Reviewed by Gwendolyn Thomas Gath 1/12/2008
This was a well written and heart breaking journalistic narrative. I personally do not recall reading of them in the past are these some new characters, although upon my absence I have missed a great mass of work last year.

Continued blessings to you,

Reviewed by Karla Dorman, The StormSpinner 1/12/2008
Sadness, once again begs the question: why does God allow little ones to suffer??? Powerful pen of a mother's pain. Well done, Karen.

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

Books by
Karen Lynn Vidra, The Texas Tornado

with a little help

The Brain Food Diet by Frank Ryan

Draws on new research that shows that omega-3s can improve cognition at any age and help reduce the risk of cognitive decline in middle age and old age...  
Featured BookAds by Silver
Gold and Platinum Members

Saving Bill Bailey by Alan Greenhalgh

A Short Story How Men's Sheds Save Lives..  
Featured BookAds by Silver
Gold and Platinum Members

Authors alphabetically: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Featured Authors | New to AuthorsDen? | Add AuthorsDen to your Site
Share AD with your friends | Need Help? | About us

Problem with this page?   Report it to AuthorsDen
AuthorsDen, Inc. All rights reserved.