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Luv'N Lambert Life

Luv'N Lambert Life

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

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dealing with Epilepsy

Laycie’s Story {Epilepsy Awareness}

November 9, 2013 by Dana

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.

Filed Under: 100 Easy Lessons, 2013, awareness, battle with Epilepsy, blessed with epilepsy, Children with Epilepsy, dealing with Epilepsy, Epilepsy, Epilepsy Awareness, parenting a child with Epilepsy

Epilepsy Truths {Epilepsy Awareness}

November 5, 2012 by Dana

Every November is Epilepsy Awareness Month and every year I share posts about how Epilepsy affects our lives.  Epilepsy has been a part of my life for as long as I can remember.  I have never experienced a day, a month or a year when it was not a part of my life.

I try to share about Epilepsy in order to help others who suffer from this disorder.  I try to share so that other Mothers know they are not alone on this journey.  I try to share what I know from my own experiences both of living with Epilepsy and raising children with this disorder to help those who need to know that others feel what they have and do daily.

The truth is though that some days, most days, I simply want to forget this disorder exists.  Lately, I find myself not wanting to share, not wanting to provide answers or experiences or thoughts about this disorder.  I just want it to all go away.

I hate HATE seeing my baby girls suffer with Epilepsy.  I hate worrying and waiting to see if their baby brother, my sweet baby boy, will also have this disorder.   I live in fear that I will wake up to find Jackson in the midst of a seizure, as I have his sisters in the past.  I don’t want to even think about Epilpesy’s existence in the hopes that if I don’t think about it, it will all just go away.

I know it won’t just disappear.  I know it will not go away.  But it doesn’t stop me from wishing for that very thing.

I’m a parent to four gorgeous, kind, intelligent children.  None of them deserve to have to live with this disorder.  None of them deserve to know the helplessness living with Epilepsy evokes.  They should be children who don’t have to worry.  They shouldn’t know pain or suffering.  They should be able to live normal, happy lives without sickness and stress.

I often try to find the blessing in living with Epilepsy but I’m not always able to do that.  Some days, I find myself worrying and wishing it away.  Lately, I’m having a lot of those days.  I know God never gives us more than we can handle but I wonder why we do have to handle so much, especially children who are so young.  All I can hope is that there is a purpose and a reason to glorify God in the process.

I am sharing this to show my days aren’t always roses and candy filled when living with this disorder.  I have the up and down Momma days, just like everyone else.  I worry, I fear and I want things to change but they only will when God is ready to make that happen.  Until then all I can do is love the gifts God gave me and help them to live up to his purposes in order to glorify him.

Filed Under: 2012, Children with Epilepsy, dealing with Epilepsy, Epilepsy, Epilepsy Awareness, Epilepsy Awareness Month, Epilepsy families, living with epilepsy

The Other Side of Epilepsy {Epilepsy Awareness}

July 18, 2012 by Dana

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.

Filed Under: 2012, blessings, dealing with Epilepsy, Epilepsy, Epilepsy Awareness, Epilepsy families, family, MUSC, outgrowing seizures, seizure families, seizures, VEEG, video eeg

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