Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

epilepsy monster

My Momma Heart Is Broken {Epilepsy Awareness}

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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…

Dreading Days with the Epilepsy Monster {Epilepsy Awareness}

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There are days when I just don’t want to write.  Days when I’d rather shut everything out and surround myself with my children.  Days when I don’t want to admit the monster is lurking, watching us, waiting to attack when I least expect it.  I’ve had several of those days recently.

It’s hard to ignore though, when you are laying in bed with your significant other, with two littles in between you.  It’s hard to ignore when those littles begin twitching through the night or smacking their lips in a rhythmic pattern that isn’t normal.  It’s hard to ignore when those littles are restless, bodies taken over by that unseen monster that you’ve been praying hard would just go the Hell away.

We’ve been through a lot lately – yes, that’s very much an understatement.  We’ve been through Hell lately, every last one of us.  I question when it’s going to stop and what the purpose is in it all.

Right now, today, at this very point our lives have slowed down.  There has been no seizure in a week.  The medicines seem to be controlling though Laycie’s still isn’t quite perfect, it’s getting there.  But my fear is the false sense of security, the calm before the storm before it all breaks lose again.

Last week at this time, we were battling with the Epilepsy Monster.  My poor sweet Jax was falling hard to this beast.  Thursday he had a Tonic Clonic and an ER visit.  Friday he had back to back Tonic Clonics and another ER visit, followed by a weekend stay at the Children’s Hospital.  We repeated his EEG and found NOTHING.  We did bloodwork and found NOTHING.  We raised his medicine dose and then I gave up and asked to come home.  There was nothing to be found and no reason to prolong our stay there when we could go home, be comfortable and wait it out in our home.

Last week was Hell and will stick with me just as the day Laycie had 9 gran mals and was Status Epilepticus for 13 hours has.  I will never forget my Mother calling me immediately after closing the car door to head to the store for diapers last Friday.  I will never forget how my shoes stuck in the water soaked puddles as I attempted to run in the house.  I will never forget how my baby, my sweet boy laid so still and lifeless in my Momma’s arms when I opened her door.  How she raised him up in her hands and he was just gone, so quickly gone and there was absolutely nothing I could do but pray and wait.

People tend to look at children, at people with Epilepsy and think there is nothing wrong.  A perfect child with a hidden secret that can’t be seen is thought of as being normal.  Our life is far from normal and days like the ones we had last week are days that I hate.  The days when their is nothing that I can do but pray for my children, pray for my olders to be patient and know I love them.  Thank God that my Emma, my oldest daughter has seemingly outgrown this beast.  Pray that her sister and her brother soon follow her in that, though I know it will be a long road to get there, if we even do.

I have hope.  I have faith.  I have all the things needed to get through this but it’s not easy.  I don’t like to even acknowledge it or talk about it but I know I have to.  I feel called to.  And perhaps that is God’s point in gifting me with 3 out of 4 gorgeous, sweet children who suffer with this disorder.  Perhaps he simply wants me to share, to speak out, to acknowledge this beast and it’s impact on our life so that others can better understand it and yet others won’t feel so alone.

I long for a normal life with normal kids who have normal illnesses like colds and such.  I have a normal life with children that have been blessed with Epilepsy.  This is our normal.  These are our days.  This is our life, impacted to the fullest upon every day.  Without God, I could not manage, could not make it through, could not even begin to deal with any of this.  I am thankful always for his presence.