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Karen Lynn Vidra, The Texas Tornado

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Jacob's Hope: Special Needs Parenting 101. (Part Two)
By Karen Lynn Vidra, The Texas Tornado
Thursday, January 12, 2012

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An update about a very special little boy and his family, as written by his mother.

Image of storm clouds in various stages of development (c) 2009, by Karla Dorman.

Jacob Ibriham is a miracle.  There are no two ways about it.  I am his mothe and I, for one, am proud of it!

Jacob just turned three about two months back, in November.  He was born around Thanksgiving.  He joins big sister, Rachel, who is six, and is as healthy as Jacob is frail.

Jacob has Canavan disease, a cruel, neurodegenerative disease that robs babies (or very young children) of their sight, hearing, speech, and physical/mental capabilities, until they are rendered helpless.  Both Herschel (my husband) and myself carried the offensive Canavan gene; we unknowingly passed it onto our son.  (Amazingly, our daughter was unaffected.)

Jacob seemed developmentally on target, but then he started losing one skill after another; it was as if he were going backwards.  He can see and hear as of this time, but eventually, both will vanish.  He is getting ready to have a stomach tube (a G-tube, or gastrostomy tube) placed because he is losing the ability to swallow.  He has been in the hospital several times this past year with pneumonia; twice we nearly lost him.  It has been a very scary time for all of us.

We are trying to be positive to help our son, but with Canavan's, nothing is pleasant.  We have purchased a wheelchair for him; he can no longer walk by himself.  His little legs are just too weak to hold him up.  It has been a very hard adjustment.  

Jacob, fortunately, seems to like his "new wheels", though: it gives him an opportunity to still get around,.  He loves the sensation of being rolled from place to place.  He will sit there and laugh his head off!

To hear our son laughing is a gift.  We know he will lose that as well.

 We must learn to enjoy it every chance we get.  Same goes for his singing (humming, actually) and his happy squeals whenever he sees new and exciting things.  Even with all that Jacob is going through, he is a thoroughly happy little boy.

Rachel, meanwhile, has learned much these past few  years.  She has learned compassion, acceptance, and tolerance of what is going on with her little brother, but it still makes her sad.  I can see it in her eyes; she knows that one day he will no longer be with us.  

That makes all of us unhappy; this is when we wish that there wasn't anything like Canavan disease.  We hate Canavan's for what it does to families!!  It is one of the cruelest diseases known to man, yet many people have never even heard of it, so it usually goes unnoticed by most.

Well, I hate to run, but I have to go to the store.  We are expecting a winter storm to move in later tonight; up to a foot of snow is expected to fall in our general vicinity.  I will write in here again; if not me, then Herschel will.  You will hear from one of us, irregardless.

Until later, this is Beth Rosenblatt saying so long; Yeshua bless!


~To be continued.~   

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Reviewed by Paul Berube 1/13/2012
So very sad, Karen. But, as always, so very well told.
God bless you, my friend.
Reviewed by Michelle Kidwell Power In The Pen 1/12/2012
Such a frightening, heartbreaking condition, but this is a well told story, thank you for sharing
In Christs Love
Reviewed by Karla Dorman, The StormSpinner 1/12/2012
Canavan's is a terrible disease ... children shouldn't suffer. :( Well done, Karen.

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

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Karen Lynn Vidra, The Texas Tornado

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