Wednesday, July 18, 2012

The Other Side of Epilepsy {Epilepsy Awareness}

A few weeks ago we had our VEEG for Emmalee which showed us she no longer has seizures, thankfully.  In this post, I want to share my reactions to that testing and our life itself.  I've been meaning to write about it, but I keep putting it off.  Today I'm making myself tell the truth though.

It's hard being a Mom of three with one on the way and three stepkids to love too.  It's even harder being the Mom of two girls with Epilepsy.  I guess I should change that to one daughter with Epilepsy.

It's been a long road with my oldest, going through all of this for the first time as a parent and not a patient.  Watching her seize without any known cause.  Seeing her stare off for periods of time for absolutely no reason.  Taking her off her medications and praying to God every minute that she will be in control and not suffer from that.  Praying too that she would outgrow it and never suffer again every second of my normal thought-filled days.

I think the hardest part has always been leaving it up to God, placing her into His hands and knowing He would protect her.  After all, as her Mother, isn't that my job to do?  Didn't He give me that purpose in life?

When the doctor came in to our room and finally after four days of testing told me that she was perfect, she was smart, she was beautiful and a blessing, my first thought was I knew all of that already.  I'm proud of her in all her stubborness and I'm thankful to have her every single day.

When he told me she no longer showed any signs of Epilepsy my heart jumped for joy.   Really it did.  But what you don't know is that at the same time, it slammed down so hard that I thought it dropped out of me for a few minutes.  Absolute truth.

I mean I should feel so blessed by this but my only thoughts at the moment was "Thank you so much God but why not Laycie too?"  Why does one of my daughters still suffer from this while the other no longer carries the burden?  Why does my baby still have a chance of seizing while my big girl is done with it all?  What makes them so different in His eyes that He does not heal them both?

I know I am not supposed to know these answers.  Obviously, He has plans for Emmalee that require her to be well and healthy and live a long life.  And I haven't given up hope that He will completely heal my Laycie too.  I know He can make that happen.  But I couldn't help but wonder why one and not the other.

I'm human.  I have human faults.  I have human thoughts.  I control.  I am a Mother who God has graced multiply with blessings.  All of these are the reasons I immediately thought as I did.  I am not perfect and I never will be.  But He trusts me with His blessings.  He gifted me as the Mother of these girls that He allowed to be burdened and He took away the burden for one.  For that I'm am thankful, I am in awe and blessed by Him, as is she though she may not know it.

I pray daily for Laycie to be blessed in the same way but I also know that blessing may not meet His purpose for her and I have no choice but to be accepting of that.  I'm thankful every day each of my children are here to bless my life and each other.  I could not imagine having life any other way than it is with them in it, even with Epilepsy in our lives to.

I was talking with a dear friend the other day who's beautiful darling girl also has this disorder.  She was feeling things and simply needed a confirmation that she wasn't wrong for feeling them.  They were feelings that only someone in her shoes could understand and yes I thankfully did understand them.

As a Mom of a child with a disorder, we tend to feel alone - as if no one else understands our feelings and everyone else is tired of hearing them.  That simply isn't true.  God allows us to walk these similar paths and become friends with each other to help as we walk through these things.  I share this story because my friend brought it to my attention that she felt alone and that no one truly understood.  I encourage other families to share so that other's know they are not alone in their feelings, in their joys and disappointments and their fears.  There are others who do understand what you go through.

We have come a long way in finding ways to connect through this disorder and ways to change to help each other.  Keep going at it.  I know I will.

1 comment:

  1. Rejoicing with you about Emmalee, and praying that God will choose to remove epilepsy from Laycie...and soon. I'll pray it always for you; God doesn't care if He hears the same prayer a million times or more. (((hugs)))


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