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Karen Lynn Vidra, The Texas Tornado

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Chloe Grace's Story, Part Two. (Maple Syrup Urine Disease)
By Karen Lynn Vidra, The Texas Tornado
Thursday, September 17, 2009

Rated "G" by the Author.

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"What did I ever do to deserve all of this??"

A mother copes with the care her young daughter requires because of a rare disorder that's left her severely handicapped.

 

What did I ever do to deserve all of this??

Melanie Lynn here.  Melanie Lynn Ferriday of Boston, Massachussetts.  I last wrote in here about a month ago, telling you about our seven-year-old daughter, Chloe Grace, who was born with a devastating disorder that's left her severely disabled, both mentally and physically.  She requires twenty-four-hour medical care.  She is unable to do anything for herself, and it's all because my husband and myself carried a faulty gene that was passed on to her.

Well, Randy, my husband, has done it.  He has left the picture.  He got tired of dealing with his daughter, so he said no more.  I am devastated.  I knew it might happen; I just didn't think he'd be serious enough to do it.

Now I am left here with Chloe, with nobody but my mother (and maybe a few friends) to help with her care when it gets to be too overwhelming for me to handle.  Now that means I might have to get a job myself, so we can pay the bills, or at least get some assistance outside the home.  We may even have to place her in a residential center for children with disabilities; however, how can anyone afford it?  Medical care is outrageously expensive, and even if this health care reform bill goes into effect, I don't see any guarantees that it would do people like us any good.

Chloe is in a wheelchair when up; otherwise, she spends her days lying in her hospital bed, waiting for one of us to come dress her, change her diapers, hook her up to her feeding pump every five hours, give her her meds thorugh her G-tube, suction her or do chest physiotherapy on her to keep her lungs as clear as possible, hook her up to her oxygen at night, make her presentable when she is up or has to go anywhere.

We do this every day, twenty-four-seven.  Each day is the same as the one preceeding it.  There is no break in our routine; it's starting to get monotonous.

I sometimes wonder I am being punished by God for not being a good enough parent to my child.  Why else would all of this keep happening to me?  If it's not one thing, it's another; frankly, I'm getting sick and tired of it already!

When Chloe is in the hospital, it's even worse.  If I am not there, then my mom is; our phone calls have gotten way out of hand, as we keep everyone informed of the latest details in Chloe's condition as she fights yet another illness, another infection.  She is so fragile; any little bug could come and kill her.  I really worry now, what with this swine flu scare going about.  What would happen if Chloe were to get it?  She'd be as good as dead!!

If anything were to happen to my baby girl, I don't know what I'd do!  I love her, don't get me wrong; however, I can only take so much!  I'm about ready to reach the breaking point now!

Well, I've made myself cry yet again, plus Chloe's IV pump is singing.  Have to see what's going on.  I just don't know what's going to happen; I'm scared now more than ever!

Please keep us in your thoughts, and if it is okay, please say a prayer for my child!  I would greatly appreciate it!  Thank you!

~Melanie Lynn.  :(  *tears!*


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Reviewed by Carole Mathys 9/18/2009
Sad story, let hope there is help available out there to take some of the strain off her...good pen, Karen
peace, Carole~
Reviewed by Georg Mateos 9/18/2009
And we can ask, every day, why???!!!, and the answer still wouldn't come.

Georg

Reviewed by Dawn Anderson 9/17/2009
My heart goes out to this poor mom....excellent second installment, Karen.
Reviewed by Michelle Kidwell Power In The Pen 9/17/2009
Sounds like a Mommy to her breaking point and understandbly so, thanks for sharing
In Christs Love
Michelle~
Reviewed by Cindy Tuttle 9/17/2009
I hope she gets the help she needs. Great story Karen.

With Love,
Cindy
Reviewed by Rose Rideout 9/17/2009
A very sad write Karen but as usual you keep us well informed. Thank you.

Newfie Hugs are on the way, Rose
Reviewed by Paul Berube 9/17/2009
Sad update, Karen.
Reviewed by Karla Dorman, The StormSpinner 9/17/2009
Caught between a rock and a hard place ... sad. Well written, Karen.

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


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Karen Lynn Vidra, The Texas Tornado



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