Luv'N Lambert Life

Mental Health, Homeschooling, Epilepsy and More

living with epilepsy

Weak but Blessed in the Normalcy {Epilepsy Awareness}

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Everyone keeps telling me how strong I am.  But I don’t feel strong.  I feel weak and tired.  I feel overwhelmed and unsure.  I have no idea how to manage my life as it currently stands.

I’m well aware it will all fall into place.  This isn’t my first time dealing with diagnoses and doubts.  I have two daughters with Epilepsy and now it’s possible that my son has it too.  I know from my life with my daughters that this is only a season and before long it will be routine and balanced again, as much as it can be when you live daily with Epilepsy.

This is normal for us.  The ups and downs.  The shifts and swings in life.  It’s our daily normal.

My girls have never had a “normal” life.  All they’ve known is Epilepsy.  Winston, my oldest, briefly had normalcy.  I cherish those days and I miss them greatly.  I realize now I had hoped for the same with Jackson because surely my boys wouldn’t inherit this dreadful monster.  I mourn the loss of that “normalcy”.

I remember being naive when Laycie was born.  I remember thinking “ok I have my daughter with “E”.  Laycie can’t have it too.”  I remember enjoying those days with her thinking this monster would never rear it’s god-awful head.  But then it did and here we are fighting daily.

I guess I thought the same with Jackson, though I wasn’t quite as naive this time.  I have watched for it in him for months.  As we passed the four month mark, I breathed a little easier.  I let my guard down, even when I knew better.

When I got the call the other night, I just remember thinking “my heart knew it was coming” and “not my baby too”.  But my instincts, my Momma heart, my sixth sense have all screamed at me to “be aware” for months.

Yesterday was Jackson’s neurology appointment.  The doctor went through the usual questions.  We answered them as best we could.  He wonders if there is a possibility of Apnea.  I tell him, “I don’t know”.

He asks me, “what would you like to do?”  Well, doc, I’d like to run like hell and hide my baby.  I’d like to have my baby back, normal and pretend this never happened.  I’d love to pretend it’s all a dream or there is another cause.  Previous history, strong family roots, gut instinct all tell me differently.

This nightmare will not just “go away”.  Its here and it’s big as night and day.  I chose to hold off on medicating Jackson.  I chose to agree to have an EKG for him to check for Apnea and an EEG to check for seizure activity.  I do not want medicines to prevent that possible activity from showing up, even though we know it may not anyways.  It doesn’t always show for me or my girls when have had EEG testing in the past.  I do want the chance to find out.

I’m at war with praying right now.  I pray he never has another seizure episode and at the same time, I pray it would just happen and get it over with.  Then I’d know what’s wrong with my baby and I wouldn’t sit in fear of him stopping breathing never to regain consciousness again.  I’d know.  We’d be able to treat him.  And life would move forward as “normal” as we could get.

Jackson is back to normal for him.  He’s smiling and cute as a button.  He’s trying to crawl, learning new words every day and working hard with his sign language.  It’s as if nothing ever happened which makes me feel even more like it was a dream even though I know it wasn’t.

I feel so weak and tired from all of this and I know that’s ok!  I don’t have to be strong but I have to get through it.  My strength comes from God, from Life, from my children.  I see them daily and know I must face the days ahead for them, even when I want to hide from it all.  Hiding won’t get a diagnoses or treatment for my son.

This is life.  This is the raw emotion of a Momma who is fighting every day to provide a normal life for her children who didn’t ask to battle a disorder called Epilepsy that generations have carried and passed on.  This is our daily life and our “normal” and I chose to be blessed by it even when I’m at my weakest.

Life with Epilepsy {Epilepsy Awareness}

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I could keep quiet about Epilepsy.  I have for a long time.  I could let it go and move on, keeping all that I feel inside.  But what good would that do?  And who would I be helping by not sharing my thoughts and feelings.

Speaking out lets others know they are not alone.  There are many Mother’s out there who go through the same things I do daily.  Many who deal with a lot more than I have ever had to with my children.  I speak out so they know they are not alone.

Over the years, people have commented how I should work.  How can I work and leave my daughters who could drop into a seizure at any minute?  This disorder doesn’t work on a schedule.  You can’t see it.  You don’t know when it will strike your child down.

And I’m sorry but bosses don’t understand when your child simply isn’t feeling well.  They don’t understand when you call 10 minutes before work to say “My child just suffered a Grand Mal seizure and I can’t make it into work today”.  Or for a few days for that matter.

People also tell me “oh you need to put your kids into school”.  That’s always easiest to think.  But in reality, if I’m dealing with my one sick child, I can’t make it to school to deal with my well child.  I can’t make it to the bus stop to see they are dropped off or picked up.  I can’t deal with a school system who’s focus is on attendance, not the fact that my child or his/her sibling was sick so we just couldn’t make it in.

Then there is the stress that school in a classroom with 30 other students brings my child.  I know what it was like to be in Public School and have Epilepsy.  It was not fun and my teachers were rarely understanding even when they tried to be.

I did enroll Emmalee in public school briefly.  Every day she came home tired and frustrated.  She began having migraines because of the long hours, lack of structure and lack of relaxation time after school was done.  Her seizure activity spiked and I quickly took her back out.

I know everyone can’t live life like we do.  I strive to be there for my girls, for all my kids, but that’s not possible for every family.  Neither is homeschooling.  I am thankful I can do these things and be with them.  I am thankful I don’t have to leave them alone.  I never try to begrudge those Momma’s who have to do otherwise and I support everyone no matter.

These are simply the reasons that I do the things I choose.  It’s worked out well for me.  Josh works hard so that I can be here for the kids, so I can be here when Laycie has a seizure.

Until you have a child with a medical issue, it is hard to comprehend what life is like for a Momma who does have one.  You can’t walk in shoes that your feet have never fit into.  It’s my hope with my blog and my Epilepsy posts that I am helping others to not feel alone and I’m helping others understand what we as Special Needs Momma’s go through every day.

If I can encourage one Momma to not feel alone.  If I can help one Momma find her voice in this fight.  If I can help one Momma feel blessed even in the light of darkness than I have met my goal.

The Darkness That Lurks {Epilepsy Awareness}

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How do you do it?
How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won’t die?  How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?
My Momma heart breaks for her.  My Momma heart wants to scoop her up and hold her tight and keep her safe forever.
I want to SCREAM.  I want to SCREAM to God, “WHY?!  Why my daughter?  Why my precious baby?  Why does she have to suffer with this?  Why does anyone suffer?”
I can’t reassure her that she will wake up from the next seizure.  I can’t reassure her that there won’t be another one.  I can only tell her about Heaven and all the great things that await her there.  Even when I don’t want to because I pray deeply and hard that she will not know for a long, long time.
“Momma, who turned out the lights?”, she asked me. “Was it you?” “No, baby.”  “Was it Daddy?  Why would Daddy cut the lights out on me?” “Daddy didn’t, angel.”  “Oh, Grandma did it then!”
All this past week she has been terrified of the dark.  It didn’t take me long to figure out what she meant.  Her whole little safe world went dark last Tuesday morning.   She couldn’t see for almost an hour.  Her eyes dilated so much that she wasn’t able to see anything but a black abyss.
And it hits me: just how terrified she was.  That this seizure affected her sight so badly.  That the next one could honestly leave her blinded for good.  That I’m thankful this seizure didn’t leave her blinded for life.
It hits me that she could have died last Tuesday.  That she stopped breathing on me.  That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing.  It had completely taken control.
All I could do was watch and pray.  All I can do now is wait and pray.  I do daily and she has prayed too, wholeheartedly.  We all have.
Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old.  One week has passed.  Multiple conversations to make her forget and feel more at ease have happened.
Every day we have the same talk.  “Momma, it was dark.” “I”m so sorry, Laycie.”  “But you didn’t turn out the lights on me?” “No, baby.” “You will keep on a lamp for me.” “Always, if it makes you feel better.”
And I do.  She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again.  I leave the light on for her and for me.  It helps me see if she’s breathing.  It helps me see if she’s a little too still.  And it puts her little mind to ease.
I don’t know what the future holds.  I don’t know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute.  And pray, for her and with her every time she needs to do that and even when she isn’t even aware I am.
I’m thankful that God has blessed us with more time.  I’m well aware of the Mothers that weren’t given that chance.  My heart aches for them and for all the Momma’s who must watch their babies suffer so much.
For now she sleeps, though it’s still very much restless and we wait patiently to see if this monster is lurking or controlled for now.  Only time will tell.

The Epilepsy Monster Strikes Again {Epilepsy Awareness}

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Days at Luv’N Lambert Life appear fairly normal.  There is no general chaos or drama unless it’s caused by the outside world.  We go about our days, living and enjoying life with little issue.

But there is a hidden danger that lurks here every day.  It strikes when I least expect it.  It completely wipes my child out and hinders my days and weeks.
Epilepsy is our hidden danger.  You don’t see it physically in my children on a daily basis but it’s there, lurking, waiting to strike when I let my guard down and think everything is ok.
Yesterday morning it hit us again.
Monday night went as planned: dinner, kids baths, kids to bed, get things laid out for therapy on Tuesday.  It’s our routine.  We do it every week.  No problems.
The kids went to bed.  They were staying over at Grandma’s house.  Laycie, as always, slept snuggled next to Jackson and Grandma in Grandma’s bed.  All was well and everyone slept nicely.  I slept at our house, not 100 yards away.
Morning came and my phone buzzed heavily.  I honestly thought it was my alarm telling me to get up and get ready for therapy.  It wasn’t.  The phone said “Mom”.  My heart dropped as I answered it.  All she said was, “Get over here NOW!”  My mind raced to think “which one of my babies is hurt.  Oh God, please let everything be ok!”
I knew better.  I knew something was wrong.  I ran into the house and yelled to my Momma, “where are you, what’s wrong”.  I could hear her calling Laycie by name.  It was all like a terrible nightmare.
I walked into her room to see my baby, my tiny sweet precious girl laying with her legs straight down, arms pulled stiffly up to her body.  Her lips were grey, blue.  Foam was pouring out of her mouth.  Vomit mixed in.
She was seizing and there was nothing I could do.  I remember saying, “is she ok? Is she breathing?”  No, at that point she wasn’t.  Her heart was beating, her breathing had stopped and she was stuck in the midst of this seizure that we couldn’t stop.
Poor sweet Jackson was laid at the end of the bed just looking around.  He had no idea what was going on, as this is his first experience with his sister’s Epilepsy.  He looked from me, to sissy to Grandma and wondered why no one picked him up though he was smiling sweetly.
Laycie was our only concern at that moment.  I had left my phone at the house, so I grabbed my Mom’s.  Thank God it was charged.  I dialed 911.  A man answered.  I left the room, my baby with my Mother and ran to get my Mother-in-law, all while telling this kind man the details of our emergency.
On the way, I told Winston and Emmalee to get up.  I remember telling Emma, “your sister is sick, get Jax now”.  My sweet strong, Emmalee who went through all of this so many times herself is now on the other side, watching her sister suffer.  And my rock Winston who I could not have made it through without.
I remember telling the 911 dispatcher my address while running across the yard to my Mother-in-laws.  I remember telling him my number.  I remember telling him “my 5 year old is having a seizure, please God hurry” “she isn’t breathing, she’s blue, she’s foaming”.  I am quite sure he thought I had probably lost my mind by this point.
I remember standing in front of my Mother-in-laws door thinking “should I knock or just walk in”.  I knocked, then I reached for the handle.  “Is it locked, oh please don’t let it be locked”.  As I reached for the knob I could hear the dogs barking so I knew she’d be getting up to see what was wrong.  I called for her.
She was coming down the hall and asked “what’s wrong”.  I told her “Laycie is having a seizure.  I need you to come now”.  I turned around, left and ran back to my baby.  She followed.
I ran back into the house and updated the dispatcher on Laycie’s condition.  She was still seizing.  Her body jerking uncontrollably while my Mom talked to her, trying to console her.  She was still pale.  We rolled her back onto her side.  She was so still but she was breathing again.  I remember taking a breath at that point and thinking “thank you God, it’s almost over.  Please don’t let her go into a another one.”
The dispatcher was still on the phone.  At some point I ran to our drive to see if the first responder was arriving.  I remember him telling me the fire truck would come first.  At this point they weren’t there.
I ran back inside.  Laycie was still but not seizing.  I ran back out and the fire truck was pulling in.  The dispatcher hung up.  I waved the fireman over.  I told him she was inside.  I led him to her and let him work.  I could hear my Mother-in-law saying “the ambulance is here”.  I heard her telling me “you need to get dressed so you can ride with her to the hospital”.  I ran out, waved the ambulance to the back.  I ran to get dressed.  I grabbed my purse, my phone, threw on clothes, grabbed Laycie a dress and ran out the door.
By the time, I got back the EMT was carrying her to the ambulance and she was crying uncontrollably.  But it wasn’t a cry, it was a scared, rhythmic whine.  She wanted her Mommy but I couldn’t hold her.
I jumped onto the ambulance first.  Then the EMT lifted her in, along with herself.  She laid her on the gurney and buckled her on.  She handed her a huge stuffed bear, as big as my Laycie and she snuggled right into it.
I realized about the time we got down to the mailbox and I began to breath again knowing she would be ok for now, that I still had my Mother’s phone.  Everything had happened so fast that I had forgotten to hand it back to her.
When we arrived at the ER, Laycie’s eyes were still dilated and she was still doing her rhythmic whining.  They lifted her into a bed.  It wasn’t long before the ER doctor came in.  He asked all the usual questions.  I told him I simply had her brought in to be monitored.  He asked “what kind of monitoring are you expecting?”  My honest emotion to that question was “what the hell?!”  I replied, “I want her vitals checked and I want her here in case she seizes again to be sure her seizures are controlled”.
Laycie’s seizure was a Grand Mal.  It lasted approximately 4-5 minutes.  She was postical for 3 hours.  She was completely unresponsive when the first responder arrived.  My Mother said he insisted the EMT’s carry her in.  Other than us, he saw the most of the results of her seizure.

It took Laycie 30 minutes to become responsive, other than the rhythmic whine she had in the ambulance.  Her first response was to shake her head.  It was barely visible and she would only tell me yes to simple questions that I asked of her.
It was another 30 minutes before she would speak to me.  She couldn’t see me because her eyes were so dilated and out of focus.  She couldn’t speak because her seizure had locked that part of her brain at the time.  She couldn’t take her medicine because she couldn’t open her mouth.  She wasn’t able to control that part of her body.
She didn’t talk until her Daddy came in about an hour after arriving at the hospital.  She was so happy to see him.  She lit up the room with the expression on her face.  He climbed in the bed with her and she snuggled right into him.  It was then she started talking.
She was quiet and slow but she was coming back to herself.  We were finally able to give her her meds which she took with applesauce, though she wanted her usual yogurt.
She wanted to eat so her nurse brought her juice and crackers and found her a sausage and cheese biscuit.  Laycie ate the sausage and picked at the rest.  Her tiny body was so tired though she was trying to gain control of it again.
After eating she snuggled up to her bear the EMT’s had given her and took a nap.  It only lasted about 15 minutes but when she woke back up she was back to herself again.  She wanted to get off the bed.  She wanted to go home.  She kept trying to pull her wires off and put them back on.  She was ready to be Dr. McLaycie, as we often call her at home.
Her least favorite part, even though she tried to prepare herself, was having bloodwork done.  She did so well though.  She tried not to cry but when the needle went in she lost it.  Poor, sweet angel.
It wasn’t long after that we were able to go home.  She’d had no seizure activity in the ER.  Her vitals were all good and strong.  The ER doctor called her med team at MUSC, who advised them to tell us to increase her morning dosage on her meds and to call and schedule her next appointment to be seen.  So that is what we are currently doing.
We came home and we’ve been relaxing together ever since.  She’s laid in Mommy and Daddy’s bed and watched tv.  She’s eaten well and has a strong appetite.  The med increase is making her excessively thirsty.
I’ve tried to encourage her to sleep but she’s scared.  I asked her why and she told me a Monster tried to take her over.  I can only assume she means her seizure.  I’ve held her and talked to her until she felt safe enough to sleep.
I’ve personally struggled to go to sleep.  I’m terrified of her having another seizure and being alone in it.  Or worse, not waking up from it.  I worry that I will wake up to find my baby not breathing.  It is a living nightmare.  A horror movie come to life.
Every twitch she makes, I wake up and check to see if she’s ok.  I refuse to disturb her other than checking to see if she’s having a seizure and I won’t leave her side for long.  When I do, someone is with her: Grandma, her brother, sister or Daddy.
Right now I’m in watch overdrive.  She on the other hand, appears to be back to normal.  She feels great, she says.  The only set back is her fear of sleep and the thirst from the meds.  I wish I could feel as at ease as she does.
She now carries her big white bear with her everywhere.  We’ve named him Mr. Snuggles.  In one day, they’ve been through a lot together.  I imagine they will go through a lot more.
I’m sharing our story so that others have an idea of what a family and a child with Epilepsy goes through.  Everyday people see my child and think “there is nothing wrong with her”.  I only wish that was so.  You can not see her disorder.  It attacks when we least expect it, when we let our guard down and begin to think it’s ok.  But it’s there.  It’s a daily part of our lives and we are always looking, waiting, preparing for it’s attack.
Other Momma’s who do this daily understand.  But not everyone gets the picture.  My hope is that our story, our blog, our life helps give you a better understanding of what Epilepsy really is.  And my prayer is that you never have to experience it first hand.  SEIZURES SUCK!
God bless.
<3 dana="" p="">

Blown Away {Epilepsy Awareness}

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I’m sitting here tonight, blown away.  Earlier tonight another sweet angel was called to Heaven.  This sweet boy had Epilepsy.  He was only a year older than my sweet baby Laycie.

6 years old seems like such a short life.  Laycie is 5.  I cannot understand how a child can suffer such a thing and have brought God Glory in such a short time.  Things are not for me to understand.

I pray daily for children, like my babies, who suffer from Epilepsy, among other things.  I have so many people that I love who’s beautiful babies have this dreadful disorder.  And I wonder why must our children suffer from this?

Another friend told about her day as an Epilepsy Mom.  She was confronted by a woman who told her that her precious son has Epilepsy because of her choice to have tattoos.  It was God’s way of punishing her.  I say if that’s God’s way for doing something so simple then I guess everyone would be punished.  And if Satan has a hand in it then that should be a simple fix!

Unless you have a child with Epilepsy or some similar debilitating disorder, you cannot understand what it’s like as a Mother to deal with insolence and stupidity when it comes to others who don’t understand.  Stereotypes and stigmas surround Epilepsy.  People truly believe that demons possess those of us who have Epilepsy.  People think holding an exorcism will simply take them away.  But that’s not how it works.

This disorder is VERY REAL.  It’s real for all of us who daily watch our babies struggle to hold on for life.  And it’s real for those of us who have to watch our children slip away, who have to say goodbye way too early to those precious beings that we love so much.

I cannot imagine what it is to lose a child.  I pray to never have to know.  But the reality is that my own baby could leave me just the way this sweet boy left the world today: in a coma induced from her seizures, never again waking to tell me “I love you, Mommy” or “sleep with me Mommy” or “I need some Mommy time”.

Tomorrow, I will make it a point to go to her therapy with her, to hold my baby boy, to kiss my eldest head and to hug my sweet artist a little tighter.  Tomorrow I will make it a point to be there in the moment and be thankful for the blessings I do have because they aren’t promised but they are a gift to be appreciated.  Never take them for granted and keep the family of the sweet boy who passed today in your thoughts and prayers.

God bless <3 p="">

Routine Neurology Visit {Epilepsy Awareness}

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Yesterday, we had an appointment for Laycie at Pediatric Neurology in MUSC – Charleston, SC.  It was a routine checkup to see how she’s been doing and discuss her medication.  Just another visit for us.

Of course, everything went well.  I have concerns about her medication that we discussed with our neurologist.  For some reason, Laycie has side-effects for every medication she takes.  Depakote is no exception.

Her neurologist suggested I give Laycie a multivitamin with B6 to see if that helps to improve our side-effects.  B6 is not a new vitamin but the helpful effects on patients with Epilepsy has just been noticed by many neurologists.  It’s being used in the hopes to help balance out negative effects many seizure medications cause.

Medicine has come a long way in the time since I was born 33 years ago, growing up with Epilepsy and even in the past 9, almost 10 years that I’ve been raising children with Epilepsy.  Every year more and more is becoming known about this disorder but there is still relatively little that anyone, doctors included, can understand.

What we as parents and patients of Epilepsy must remember is that the brain is such a complex unit.  Add to that the complexity of Epilepsy itself and well you find a lot of confusion.  The brain is like a complex computer with many different areas that control every single inch of our bodies, inside and out.  This computer is only completely understood by God himself and no other being can read or understand it.

What we can do to help learn more is to detail everything we can about how Epilepsy affects each of us, how it affects our children and our families.  We can share that information with other parents and patients, along with our neurologists.  We can ask to join in on Epilepsy panels and volunteer for testing.

All of these things together work towards the medical teams learning more and more about how our brains work and how Epilepsy affects each of us.  Nothing is too small and every one of us can help.  Ask and find out how you can do your part today.

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