Sunday, August 4, 2013

Lucky While Living Cursed {Epilepsy Awareness}


Today someone mentioned that families with history of Epilepsy are lucky.  That's a big word: Lucky.  It means to be fortunate.

  1. luck·y  

    /ˈləkē/
    Adjective
    Having, bringing, or resulting from good luck: "a lucky escape".
    Synonyms
    fortunate - happy - successful - providential
People assume that because a family, like mine, has 5 generations that have Epilepsy and that because I have three children who have Epilepsy, that I am fortunate because I have prior case history to go on and I know where our Epilepsy is coming from.

Let me tell you, that could NOT be further from the truth.

It is true that we do have a strong family history with Epilepsy.   We were lucky to know what this disorder was when my Emmalee began showing signs of seizure.  I was not a satisfied Momma when she was initially diagnosed as having Febrile Seizures and I did not rest until we had the correct diagnoses.

I was lucky to know that I had had this disorder, to know of the signs, the stigmas and the common misdiagnoses of this disorder to be something less.  I was lucky to have a Mother who had suffered through night after night of wondering if I was ever going to wake up in the morning, if I was ever going to be a "normal kid" or if I was going to wake and go into a seizure without her knowledge.  I agree, I was very lucky to have those things.

Her knowledge of this disorder helped get me through, but honestly, we are no farther in knowledge with this disorder than we were 34 years ago when I began having seizures myself.  We are no farther along in knowledge than my Great-grandfathers family or my Grandfather's mother was when he went through this as a child.  We are no farther along in knowledge than we were when my Grandfather was on three separate medications in an attempt to control this Monster that even now they do not understand.

I am NOT a lucky Momma to have this family history.  Having more than one child with Epilepsy does not help me to understand this any better than it did the day I had one child with Epilepsy.  What I've learned past how to deal and the strength I've gleaned from my Mother in dealing with it, I have taught myself.

I listen to my children's neurologist.  I grasp any tidbit of information they have to offer.  I can sense when they are full of crap and my motherly instincts are rarely wrong.  I force them to listen even if it takes multiple visits or me taking my child's care into my own hands to make that happen.  I do what I must to get my babies the best care possible.

Fact: There is NO CURE for my children.  I've known this for a long, long while.  It was confirmed by our neurologist last week, not without care but in an effort to tell me the truth.  It wasn't a truth I didn't already know.

Genetic disorders pass through from generation to generation on a gene.  Generally, they skip generations, passing down the line but not activated.  Patterns like Uncle: niece, Grandparent: Grandson and so on are the common inheritance.  It's very rare to pass from generation to generation directly without there being a gene that causes it.  And it's extremely rare to pass through for 5 straight known generations (we do not truly know how many generations before my Great-grandfather have had this disorder as there is no record).

Because this disorder is passed on a gene in my family, there is NO CURE for us.  We cannot edit genetic inheritance.  We cannot choose DNA.  It's a flip of a coin as to which child will pass this on and how many of their children will have it.  I know at least one of my grandchildren will inherit this.  I know most likely at least one of each of my three children's children will have it.  That's 3 grandchildren, at least, possibly more that will go through this and there isn't a cure for them.

It can be controlled.  A cure could be found for my children dealing with it in their lifetime.  I'm not saying that.  What I am saying is that it won't stop with us.  It will travel on and curse the next generation with it's terror.

I may be fortunate to have known what this disorder was for each of my children to start, but as I've already stated, I know because I've taught myself.  The records of my relatives before me are not accessible and even if they were, I doubt they would provide much information.  This disorder was hidden from the world.  It was not and is still not understood by even the doctors trained to provide care for it.  There is no wealth of  wisdom to glean from the past history that we have.

Each and every one of my children's cases are different.  Each and every one has been treated like a first time case with no common connection.  I am currently pushing for answers, for comparisons, for more information on this disorder and how it relates to us.  My goal is not for a cure, but for understanding of how this disorder works and how it affects my family.  I plan to pass this on for my children's future and their children.  I plan to arm them with the knowledge to live through their lives with this and be empowered along their path.

This is their life with Epilepsy and the only luck they have is a Momma who will provide them with all she can in preparation for their future in living with this.

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