Friday, June 21, 2013

Life with Epilepsy {Epilepsy Awareness}


I could keep quiet about Epilepsy.  I have for a long time.  I could let it go and move on, keeping all that I feel inside.  But what good would that do?  And who would I be helping by not sharing my thoughts and feelings.

Speaking out lets others know they are not alone.  There are many Mother's out there who go through the same things I do daily.  Many who deal with a lot more than I have ever had to with my children.  I speak out so they know they are not alone.

Over the years, people have commented how I should work.  How can I work and leave my daughters who could drop into a seizure at any minute?  This disorder doesn't work on a schedule.  You can't see it.  You don't know when it will strike your child down.

And I'm sorry but bosses don't understand when your child simply isn't feeling well.  They don't understand when you call 10 minutes before work to say "My child just suffered a Grand Mal seizure and I can't make it into work today".  Or for a few days for that matter.

People also tell me "oh you need to put your kids into school".  That's always easiest to think.  But in reality, if I'm dealing with my one sick child, I can't make it to school to deal with my well child.  I can't make it to the bus stop to see they are dropped off or picked up.  I can't deal with a school system who's focus is on attendance, not the fact that my child or his/her sibling was sick so we just couldn't make it in.

Then there is the stress that school in a classroom with 30 other students brings my child.  I know what it was like to be in Public School and have Epilepsy.  It was not fun and my teachers were rarely understanding even when they tried to be.

I did enroll Emmalee in public school briefly.  Every day she came home tired and frustrated.  She began having migraines because of the long hours, lack of structure and lack of relaxation time after school was done.  Her seizure activity spiked and I quickly took her back out.

I know everyone can't live life like we do.  I strive to be there for my girls, for all my kids, but that's not possible for every family.  Neither is homeschooling.  I am thankful I can do these things and be with them.  I am thankful I don't have to leave them alone.  I never try to begrudge those Momma's who have to do otherwise and I support everyone no matter.

These are simply the reasons that I do the things I choose.  It's worked out well for me.  Josh works hard so that I can be here for the kids, so I can be here when Laycie has a seizure.

Until you have a child with a medical issue, it is hard to comprehend what life is like for a Momma who does have one.  You can't walk in shoes that your feet have never fit into.  It's my hope with my blog and my Epilepsy posts that I am helping others to not feel alone and I'm helping others understand what we as Special Needs Momma's go through every day.

If I can encourage one Momma to not feel alone.  If I can help one Momma find her voice in this fight.  If I can help one Momma feel blessed even in the light of darkness than I have met my goal.

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