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Karen Lynn Vidra, The Texas Tornado

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Nashi's Story, Part Six: Living With Canavan Disease.
By Karen Lynn Vidra, The Texas Tornado
Wednesday, February 20, 2008

Rated "G" by the Author.

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Nashi was in the hospital again, but is now doing much better, much to the delight of her family.

My girl, Nashi Danielle, continues to defy the odds placed upon her. She just got out of the hospital. Again.

Another round of pneumonia.

Today has proven to be a good day for her. Unlike the past week, Nashi's spent more time awake, more aware of her surroundings. She's been smiling/laughing/cooing more, enjoys it when placed into her wheelchair.

Her lungs have been weakened by this latest round of pneumonia; for this reason, doctors have put her on oxygen until they get stronger. Therapists come to our house and work with her, trying to keep her lungs as clear as possible, giving her breathing treatments, twice a day. It's expensive; however it's worth it to ger her well again.

Nashi is a wonderful kid: full of giggles, willing to give hugs to anyone who says hello to her. We feel so blessed she's in our lives. If anything, Nashi brings out the best in people.

On the other hand, there are those insensitive goons who stare or say inappropriate, rude, or hurtful comments. They have no clue whatsoever what we are going through; yet they feel free to give out advice on how to raise our (severely disabled) daughter.

It is because of this that we are careful who we come in contact with. Even though our daughter is blind, she can hear just fine, thank you very much! She can (somewhat) understand when people are being nice or condescending towards her. She's smarter than what most people give her credit for.

I wish people could overlook her problems, see the child we see inside. Nashi is a sweet-natured, giggly child with a ready smile for anyone. She doesn't pity her lot in life; she just takes things as they come, and when things are going well for her, this is when she shines.

She is a good communicator: her eyes, her facial expressions can tell us just how she is faring, and we know what to do to make her happy, comfortable.

I often wish that Nashi were like any other little girl; but we are glad that she is the way she is because she's taught us acceptance of those who are "different", and she's given us a whole new appreciation for those people who live with severe physical (or mental) handicaps.

I only hope that people will learn to accept our daughter, realize that she is a person, too, that she has feelings, desires, dreams, etc. If people can learn to get the "real" Nashi, then the world will be a much nicer place, not only for her, but for ALL people.

We will write in here again soon; we can write a book with all the stories about Nashi! Until later, take care and God bless!

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

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Reviewed by Karen Palumbo 2/21/2008
Used to work with children that had muscular dystrophy, cerebral palsey and epilepsy. These children and young adults had such a wonderful disposition, always happy, smiling, a joy to work with.
Nice heartwarming tale....

Be always safe,
Reviewed by MaryGrace Patterson 2/20/2008
Being blind is hard for anyone. The other senses do take over tho to compensate tho. We have "The Lighthouse For The Blind "here in Charlotte County . They were great in helping us cope with Joshua's blindness and becoming more aware of his needs. Their help is on going...Godd luck to Nashi!....M
Reviewed by Carole Mathys 2/20/2008
Good piece Karen, filled with good news about Nashi health.
love, Carole~
Reviewed by Georg Mateos 2/20/2008
And then, we always come back to those people that are not part of the solution but always be the mother of all the problems.
Like something disgusting as we try to eat lunch, we should look away with a face demonstrating that suddenly we are tasting shit in our mouths. Let them figure why people are disgusted with them for a change.

Reviewed by Stephanie Murray 2/20/2008
Karen, This story makes me think of all the petty things we fuss and moan over, as people. We should be happy for our health, children's health and family's health. Nashi seems like a delightful girl. You are a wonderful advocate for her.

Your Friend,
Stephanie Murray
Reviewed by Karla Dorman, The StormSpinner 2/20/2008

A powerful piece here - despite outer appearances, Nashi is a girl determined to l i v e. :) Well done!

(((HUGS))) and love, Karla.
Reviewed by Rose Rideout 2/20/2008
So sad when people can't see past what is visible and look deep within the heart and really see what lies there. Thank you for sharing another great write Kare.

Newfie hugs are on the way, Rose

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