Tuesday, March 20, 2018

My Momma Heart Is Broken {Epilepsy Awareness}



My Momma heart is broken.  

Just when I thought maybe, just maybe Laycie could stop taking medication, that her seizures were possibly controlled, that she'd been showing no signs of the Monster, that Monster comes and shows his ugly face again.  We were settled and content and hopeful.  We'd let our guard down.

That's the thing with the Epilepsy Monster: he comes when you don't expect it, when you get comfortable, when you let your guard down, when you start to feel safe again.  It was my hope that my baby girl would not be on seizure medications forever.  Every day, that hope goes a little farther away.


Laycie is almost 10.  She's had seizures since she was 4 months - exactly to the day.  They have not been kind to her.  

Her first seizure was a tonic clonic.  She went through multiple testing in that first 3 days after it happened.  Everything normal.  She was placed on Keppra and we were sent home.  

2 weeks later, at 4 1/2 months old, she went Status Epilepticus.  She had a 13 hour, relentless seizure that I thought would never stop.  9 tonic clonics and over 20 petit mals: we lost count at some point during the day.  I honestly thought I would not be bringing my little girl home that day.

Since then, her life has been filled with doctors, and blood work, multiple medications, therapy and more.  We've are thankful for the most part that we've been able to establish some control but even that is not 100%.  There are no guarantees for anyone who has this disorder.

For the last year, things have been going well.  We've seen very little activity.  We've had no partial or full seizures.  We had hope that maybe this was over for her. 

Yesterday morning that all changed.  She came to sleep beside me early in the morning, as is our tradition and a short while later I woke up to a rhythmic thump of the bed.  And I knew immediately we were not done with this Monster.  He was back again to show me that my hope was useless.

Laycie, thankfully, did not feel the seizure.  It was a complex partial centralized in her lower half.  Her legs shook and it lasted less than a minute.  She slept through the entire event and woke up her normal, sweet self.

She suffered no complications from it.  She felt fine all day.  She played, ate and did everything normally.  I'm thankful since we never know how things will effect her.

This morning, she slept beside me again.  No seizures but she was extremely restless.  This tells me her body is fighting and she's not getting the rest she needs.  She's argumentative and challenging today.  She has no idea why but I do.  This is the other side of Epilepsy.

So now we wait, we hope and pray.  But I face the truth: she may never outgrow this.  It may never go away for her.  

This has been our life for many years.  I'm used to it.  It's not new.  But the hope is dwindling every year that at some point she won't have doctors appointments, and scheduled EEG's each year, or blood work every visit, and there'll be no more medications to keep this Monster in control.  

It was my hope that one day she'd get to live a normal life.  One day she'd not have to do these things.  One day, she'd be okay and we wouldn't have to worry so much.

Today though, we still fight the battle.

Until next time...




2 comments:

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  2. Thank you so much for sharing, I'm going through a similar situation as you. However we have not been fighting the battle nearly as long. My son is almost 10 months and he had his first tonic clonic at 4 months. I never knew how common epilepsy was until now. You are right when you say the minute you let your guard down, the ugly monster shows. He was seizure free for a month, however just when I felt u could breath it happened again. My son has myoclonic seizures as well and is on keppra, however he is at his highest dose and we are at the point where we need to try another medication. It's hard to talk to anyone about it because no one understands, so thank you again.

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