Luv'N Lambert Life

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

Laycie

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…

Happy Birthday to My Birthday Girl!! {Thoughts From Me}

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April 8, 2012

Happy Birthday to my sweet baby Laycie.  She’s 4 year’s old today.  I can hardly believe it.  Time has passed so quickly.

It seems like just yesterday I was being prepped for surgery in anticipation of seeing her precious little face for the first time.  Due to complications, I was put to sleep and the first time I saw her face was in a photo.  She had thick dark hair and a scrunched up baby face.  Within an hour, I was holding her tiny body in my arms loving on my sweet girl.  It was as if we’d never been apart.

The first time Emmalee saw Laycie, she told me “Mommy, she’s our Angel”.  And she surely has been.  She is a true blessing to each of us and fills our heart with Joy every single day.  She is the sweetest little girl I know.  She’s thoughtful and fun and filled with God’s light.  A precious gift of God.

The older she gets, the more her personality shows and it is such a strong and triumphant personality.  She has strong opinions and a strength to overcome so much in life.  Nothing seems to get her down.  She loves everyone, loves to ask questions, sing, dance and read.  She has a hard time choosing between Mommy and Daddy’s girl and that’s just fine with us.

She loves playing outdoors, riding in Daddy’s truck helping him do whatever he needs, getting dirty, and looking for life at the pond with Mommy or Daddy of course!  I fully expect she’ll be a logger just like her Daddy and Grumpy when she grows up though Daddy wishes a different life for her.

She’s definitely no longer a baby and my Mommy heart is a bit sad to say goodbye to her little days though I am overjoyed to watch her become a little lady a little more each day.  God blessed me with each one of my children and my Laycie is certainly a blessing to everyone she comes in contact with.  She is a true gift from God and I could never imagine life without her!

So on her 4th birthday, I send my little girl lots of love and joy, just as she’s given to me.  I pray for her to grow into the young lady God wishes for her to be and she seems to be well on her way.

My Sweet Laycie {Thoughts from Me}

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Laycie is my beautiful 3year and 10 month old daughter.  She is my baby girl.  She’s a joy to everyone who knows her.

The day Laycie was born her big sister Emmalee took one look at her and deemed her our Angel.  She definitely is.  She has blessed each of us more than we surely deserve.  She was sent straight from Heaven above.

Laycie starts her day by seeking out her brother first thing.  She loves their special morning time together.  She has him fix her cereal and milk and he always happily obliges.

After that she finds me with a beautiful smile, saying “you awake Mommy?”  “You ARE awake Mommy… good morning!” with a laugh.  I love it when she tells me that!!  I love to hear her say it almost as much as I love her “I love you, I like you, Mommy”.  She is precious my sweet girl.

The next thing she asks me is “Where is my Dahee?” (Daddy)  “Is Dahee at work?”  “Yes, Daddy’s at work.” “Oh,” is often her reply.  “Do you miss Daddy?”  “Yea” she tells me.

When it’s time for her medicine she is always ready and willing to take it.  She knows it makes her feel better.  She doesn’t mind.  She’s taken it since she was a baby so it’s a routine part of her life.

Laycie spends most days alternating between each of us.  She was born into family and she doesn’t know what alone is.  She chooses by the minute who she wants to be next to and she loves spending time with everyone of us.  We love spending time with her too.

Last month, Laycie started doing preschool work.  She is learning her colors and shapes.  She is learning concepts.  She is learning to pronounce her “p’s”, her “k’s” and her “g’s”.  She loves to learn.  And every night she loves telling her Daddy what she has learned that day.  And of course he loves to hear her.

When Daddy isn’t working you can bet you will find him and Laycie somewhere together.  She is his shadow when he is at home.  He doesn’t go far without her at least knowing where he is at.  She loves her Daddy and he loves her.

When Laycie was born, her bassinet carried the last name Lambert.  Today I believe that was a promise from God because not only is it her Mommy’s last name but it’s her Daddy’s too.  One day Laycie will carry that last name once again.  In her heart, she already does.

Laycie doesn’t know much of her past.  She’s three.  There’s no need to tell her about the then.  For her there is only now.  Now, living in the home she will grow up in for life, with her Mommy and Daddy and her Bubba, her Sissy and her Justain.  Now, living next door to her Mama, her Grami and Grumpy and behind her Papa’s pond and her Maw Maw’s house.  She talks with her Nanny, her uncle Lance and her Aunt Terris and cousin Megan on the phone every chance she gets.  These are the daily consistancies in her life.  This NOW is her life.

I daily thank God for this life, for this child He has blessed me with.  There was a time I wasn’t sure if I’d ever see her again.  There was a time that I worried that the abuse she was being raised in would catch her before I could save her from it.

I would give my life for all my children.  I will fight for them forever.  There is nothing I would not do for them.  They are my life and all I want is for them to live their’s happily and in a safe, protective environment.

I’m thankful this is the only life Laycie knows, the only one she remembers.  I am thankful she has a Daddy who is here with her every day, who would give his own life for her.  I am blessed to see the love he has for our daughter, blessed that she is able to know the unconditional love of a father and family as she has.  This is the life and family she was meant to have and she loves every single minute of it.

Laycie, our Angel, has been more of a blessing than I could ever have imagined.  Blessed I am to be able to call myself her Mother.