Saturday, November 9, 2013

Laycie's Story {Epilepsy Awareness}

I'm sitting at home today, watching Laycie, my 5 year old daughter, play outside with her big brother.  Sometimes I simply cannot believe how much she has grown or how far she has come in 5 short years.  She is one of the many things I am thankful for.

It's hard to believe that at 4 months old, my perfect little girl began having seizures.  At 4 1/2 months, Laycie's medicine failed her and she went Status Epilepticus.  I will never forget that day.

Laycie was so tiny.  She was the smallest baby I gave birth to.  She was born via c-section on April 11, 2008.  It was a beautiful day and the surgery went wonderfully.  I had a healthy, precious little girl.

Her first few months went smoothly.  She increased in size and had a healthy appetite.  The only thing wrong was that Laycie appeared a little delayed in rolling but it wasn't anything I was worried about at the time.

It was hard to get an appointment with a good pediatrician in the Upstate of SC, so by the time I was able to get Laycie in for her first series of vaccines she was 3 1/2 months of age.  At that time, I had read a lot on the vaccines and I wasn't sure I even wanted her to have them but following the tradition of society, I went against my instincts to have her vaccinated.

Two weeks later, my sweet girl had her first seizure and though I know her Epilepsy isn't caused by the vaccines, I have been told it can be triggered by them.  Laycie began seeing a neurologist in Greenville Children's Hospital who started her on Keppra.  It seemed to work wonderfully for her.  Her seizures were controlled and she was "back to normal".

Two weeks later, her seizures hit so quickly and unexpectedly that the day still feels like a nightmare.  Laycie was in a steady set of seizures for 13 hours straight.  She had 9 tonic clonics that day; I lost count of the amount of partials she was having.  I still question if any damage was done from her lack of oxygen and the amount of seizures she experienced in that one period of time but her doctors assure me there have been no major after effects.  We have not experienced a day like that since but it's still a nightmare and a huge fear for me.

As I watched Laycie lay in her crib at Greenville Children's Hospital, I remember praying to God for him to not take my baby girl.  I remember asking for him to stop the seizures and her suffering.  My heart aches just thinking about those hours that I sat watching wondering how this was going to affect my baby girl, wondering if it would ever stop.  I have never felt relief like I did at the end of that 13 hours span when my baby girl opened her loving blue eyes and cried for me.

Laycie is 5 now.  We are still battling this monster called Epilepsy.  She doesn't let it get her down though.  She's just as strong today as she was at 4 1/2 months, always blessing her Momma and her loved ones.

We are lucky.  My heart aches when I read of other Momma's who watch their sweet babies suffer with seizures.  The unknown becoming their worst reality and wondering when the next episode will strike.

I've known at least two beautiful children who God has called home from this disorder, only online but their stories none-the-less are carried daily in my heart.  I ache for their kind Momma's and know it just as easily could have been me in their shoes, mourning the loss of my sweet babies.  I can only imagine their pain and I pray every day to never know it, to never share in it and that this monster will just go away.

It's still here, lurking and waiting to strike again.  I can build hope on the days when my Laycie is playing normally outside and pretend but I can never let go of the thought that she could just as easily fall prey to the Monster again, rendering her body useless while she fights the seizures attacking her brain.

Have Faith, Momma's - Faith that God is with our babies, that He carries them within His arms through every battle they face with this Monster.  Have Faith that He has given them each a purpose on this Earth and He will not call them home before their time.  Have Faith that in the bigger plan, these seizures have purpose though we cannot see what they are at this time.

Have Hope, Momma's - Hope that some day soon there will be a cure or at least an end to the battle with this Monster.  Have Hope that our children will some day be blessed to know what it is to live a normal life, even while we watch in wait for the ever-lurking Monster called Epilepsy.

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