• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
Luv'N Lambert Life

Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

  • A Bit About Me
  • Epilepsy Awareness
  • Contact

honest

Lucky While Living Cursed {Epilepsy Awareness}

August 4, 2013 by Dana

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.

Filed Under: 2013, Children with Epilepsy, Epilepsy, Epilepsy Awareness, familial, History, honest, kids, life, Life with Epilepsy, living with epilepsy, lucky, seizures

10 Things About Me {Thoughts From Me}

May 24, 2011 by Dana

It’s been a long day.  I’ve had the feeling of Satan breathing over my shoulder all day.  Not a pretty experience.  It’s lead to some serious misunderstandings and well, drama.

That brings me to this post.  I feel I should be honest, and I should truly let you know me.  I warn you that it’s not at all pretty.  I mean I am Human!  I can almost feel yall shudder at that statement!  I shudder myself.

Human – there I said it again.  I am HUMAN.  I am NOT PERFECT. 

I have opinions, like all humans.  Opinions I have formed after being on this massive planet for the last 31 (almost 32) years.  Should any of us be faulted for that?  Nope, we are all imperfect according to the word of the Bible.

I know not all of my friends believe in God or the Bible but I do so bear with me, please.  I know yall are my true friends so you already do, though I’m sure you think some of my thoughts about “God” are bogus nonsense.  I never know because you never tell me, just as I try not to do you.  I appreciate that respect.

So, I’m getting off-track in my message.  There are some things you should know about me that I probably should have thrown out there a while back.

1.  I’m a recovering Dramatic.  That’s right, I can admit it!  I have been known to be quite the Dramatic in my past.  I still suffer this issue at times.  It’s something you have to learn to overlook.  People who really know me will tell you it’s not as bad as it once was.  I fight the urge to be a Drama Queen often, daily in fact.  I have learned to put away the crown and just let life be over the years.  But there are days, like this one in fact, that it’s just soooo very had to do! 

2.  I can sometimes be selfish.  Oh, another one I can admit to! 😉 I don’t fall prey to this one as much now that I have my children.  In fact, I tend to be more selfless than anything.  I put my children and their wants first.  I put other’s needs first most days too.  Funny how having children really will change you!

3.  I speak my mind.  Not nearly as much as I once did but if I believe in it, I speak it.  I do my best to think about who could be hurt by things I say but sometimes I miss.  I remind you of my earlier comment that I am human. 

4.  I am not afraid or ashamed to stand up for what I believe in.  This goes along with number 3: I speak my mind.  If you hurt someone I care about I will let you know.  If I disagree with you I will let you know.  If I have an opinion on something I will let you know.

5.  I am HONEST.  It’s a quality missing in many folks these days.  If you don’t want an honest answer, then perhaps you shouldn’t ask me.  As I said, I will tell you what I think and what I believe in.  I will make an honest effort not to hurt your feelings, to listen to how God tells me to breach a comment or thought to you, but it will be an honest opinion.  I do my best to take in both sides to form an unbiased opinion too.

6.  Sometimes I curse.  Yes I’m Christian but no I’m not perfect.  I try not to but sometimes I do it.  Reminds me to be thankful that God forgives!

7.  I am Christian.  I am not a devout, bible smacking, “you’re going to hell because _______” type of Christain.  I am a meager, little soul who loves God and Jesus and the Holy Ghost.  I pray hard for those who cross my thoughts.  I ask forgiveness for all in Jesus’ name.  I try to follow God’s rules and I do my best NOT to judge others for any reason, though sometimes I do fail (I am human).  I believe God uses me for His Good and I try to allow him to do that.

8.  I am a homeschooling Mom and it’s something I push for other’s to enjoy.  I admit it’s not right for everyone but many simply miss out.  This makes me sad for the parent and their beautiful children.  I chose homeschooling because my daughters both have Epilepsy and my son is ADHD.  I knew they wouldn’t get the education and attention they needed in Public School.  Our educational choice is Eclectic and Unschooling, varied throughout the year.  I know some will disagree with our method but the beauty is that it is our choice.

9.  I like being old-fashioned in my beliefs.  I like having tradition.  I put God first, my spousal relationships second and my children third.  I think of them all pretty much as being first though in some way. 

10.  I learn I’m wrong on my own.  I don’t need you to “tell” me I’m right or wrong.  I have a bigger God to do that for me!  And trust me, he lets me know!  You cannot convey nearly what he can.  I simply won’t listen. 

So those are 10 things you probably didn’t know about me but now you do!  If any of this changes how you feel about me, that’s ok!  I love yall anyways.

Filed Under: 10 Things About Me, 2011, christian, dramatic, honest, Love, not perfect, old-fashioned, self, thoughts from me

Primary Sidebar

Follow Us

  • Facebook
  • Twitter
  • Instagram
  • Pinterest

Archives

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy

Facebook

Facebook

Copyright © 2021 · Genesis Sample on Genesis Framework · WordPress · Log in