Monday, March 7, 2016

Epilepsy Blog Relay: Living with a child with epilepsy



This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

In 11 days, it will be a year since the words seizures and epilepsy weaved their way into my life.  In the beginning each time the word was mentioned and I looked at my one-month-old daughter, my heart sank, fresh tears filled my eyes, and panic set in.  The word itself could send me into a tizzy.  When the child life specialist came into the room at our local children's hospital, she asked me if I knew what the term "epilepsy" meant.  To be honest, I had heard the word throughout my life, but did not know much about it.  I definitely did not think about it, and I can assure you when I pictured my future, the words seizure, epilepsy, and infantile spasms were not part of it.  Like other times before and I am sure yet to come, the life I so carefully planned was altered and I along with our family embarked on our new normal.  A normal filled with epilepsy at its core.

When your child is diagnosed with epilepsy, so many questions fill your mind.  You immediately want to know what is causing the seizures, hoping the answer might bring you some relief.  You want to know if developmental milestones will be met and if so, will they be on time?  When you learn that your daughter has a genetic disorder as the cause of her seizures, that she will most likely never have seizure freedom, and that her development will be delayed, things can seem hopeless.  Everyday becomes a battle to hold onto hope that there will be a miracle, that there will be a cure, that your child will defeat the odds.  Hope becomes your lifeline, the word you turn to for comfort, the word that brings a smile to your face, the word that gives you something to cling to in times of defeat and despair.  

It has almost been a year since our first ER visit.  In that amount of time I have witnessed my baby girl seize between 1-10 times a day, sometimes those seizures involve 40 mini seizures in one episode.  Her episodes have been as short as 8 seconds and some upwards of 6 minutes.  Her body has stiffened, shaken, and contorted into positions that are challenging to describe.  Similar to any new experience, at first you are scared, nervous, and unsure, then as the days go by you realize "you've got this" and the fear is replaced with a sense of comfort because it is no longer foreign.  With experience comes understanding, with understanding comes knowledge, and with knowledge comes strength.  Things are easier to manage, easier to talk about, easier to explain.  I have gotten used to my daughter having seizures; it is part of our daily routine; similar to changing her diaper or giving her a bottle.  I cannot remember our life before we dealt with seizures and I try not to fantasize about a life without them.  

Living a life with epilepsy means taking daily medications.  It means living a life based on trial and error and uncertainty of whether the medications will work or not.  It means making diet adjustments and as a parent pushing your moral compass regarding potential therapeutic measures that are not federally approved.  One of the worst parts of having a child who experiences seizures is that I cannot relate to her experience.  I have no idea what a seizure feels like; she cannot tell me what she wants me to do for her right before, during, or afterward.  What is worse than watching her seize is wondering if I am comforting her the way she wants.  

When your child has epilepsy, you are always on the edge of your seat...waiting, unsure when the next seizure will occur.  You are always on high alert.  It is when you least expect it, when you finally start to relax that you can be sure one will strike.  Seizures are not events of convenience, they happen in the car, during sleep, while eating, or while lying around and playing.  We have our typical "seizure routine" that we follow when our daughter has a seizure, our children know it well.  It actually brings a smile to my face when our two year old daughter tells the baby "It's otay...You otay Dondee" (Translation: "It's okay, You are okay Sonzee").  It is one of those glorified parenting moments when you receive validation that you are doing something right.  Even despite the unfortunate circumstances that surround us, epilepsy has made a positive impact on all my children, my husband, and me.  

NEXT UP: 
Be sure to check out the next post tomorrow at http://livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.  Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.


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