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Karen Lynn Vidra, The Texas Tornado

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'I Have Never Heard Of Cornelia de Lange Syndrome!': Our Story. (Part One)
By Karen Lynn Vidra, The Texas Tornado
Thursday, October 13, 2011

Rated "G" by the Author.

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A family copes with the news that their child was born with a little-known disability.

If I would have known that something was wrong with our baby, I would have probably had an abortion, but my husband said no abortion: we were to have this baby, whether it was born healthy or not.

And our child wasn't.  He was born with a little-understaood disorder called Cornelia de Lange syndrome.  Basically, he was born with all sorts of problems, including hearing/vision issues, mental disabilities, shortened, deformed limbs, seizures, and GRD (gastro-reflux disease).  He is now two years old and has been in and out of the hospital for one thing or another.

It seems that we are always running to and from the doctor's with Clark.  I know it isn't Clark's fault that he was born disabled, but it sure is hard on us! Very hard!!

We are trying to deal with Clark's problems as best as we can.  Seems that Timothy (my husband) is dealing with Clark better than I am. 

All I can do is look at him and cry my eyes out.

I am a terrible mother. 

I am trying to be strong for our son, but I think of all that he has gone through (or IS going through at the present time), and I become weak and blame myself for his problems.

We have another child, a daughter named Emma (she's four), but our time is usually wrapped with Clark.  I know she must hate her brother for being the way he is and it stabs my heart, each and every time!

Maybe it would have been best had I gotten the abortion when I found out that Clark had problems, but my husband (and my family) all put their feet down and told me I was being selfish, thinking only of myself.

In fact, we took Clark to the ER yesterday because ha had a bad seizure and he was admitted to the hospital overnight.  We expect to pick him up sometime this afternoon.  He had just gotten out last month for his GRD and he goes back in again.  I don't know how we are going to pay his mounting medical bills; Clark is going to run us straight to the poor-house!!

Just say some prayers for us; we can really use them about now!  And pray for ME especially; pray I learn to love my boy and accept him just the way he is!  I would greatly appreciate it!  Thanks in advance!

~Charlene Gilbeaux, Houma, Louisiana.  

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Reviewed by Karla Dorman, The StormSpinner 10/13/2011
TRAGIC. :( Well penned, Karen.

(((HUGS))) and love, Karla.
Reviewed by Rose Rideout 10/13/2011
Sad when a child is born this way with so many problems, it takes strength and love to deal with it and a lot of prayers. Great write Karen.

Newfie Hugs, Rose
Reviewed by Paul Berube 10/13/2011
Sad but well written, Karen. God bless.

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