Luv'N Lambert Life

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

Epilepsy Awareness

Choosing Life {Epilepsy Awareness}

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Many years ago, I was asked to write a post that I have put off until now.  My reason for not completing the assignment as asked was simply that I am always to busy.  But recently this topic has weighed heavily in my heart and I feel it’s time to speak.

I was born with a disorder that affects my day to day life.  For years, my Mother could not understand why.  She only knew it was a terrible disorder that left me lifeless for long periods of time and terrified her greatly.  This disorder is Epilepsy.

Growing up, we had no answers and we were thankful when I did outgrow the tonic clonic episodes.  My Mother beyond thankful to not have to watch her daughter helplessly suffer.  It was everything she spent her life praying for.

At 19, I married my ex-husband.  At 21, I had my son, who does not have Epilepsy.  At 23, I had my daughter, Emmalee.  At 3 months, just two weeks after her first vaccines, she began having seizures as well.  They continued until she was 5 when she also outgrew them.  God is amazing.

As Emma grew, I became pregnant with my third child, my daughter Laycie.  Having Emma, I thought, okay we have this disorder, she has it and so my next child will be fine.  Not true.  At 4 months, just two weeks following her vaccine series, Laycie also began to have seizures.  At 4 1/2 months, Laycie went Status Epilepticus with 9 tonic clonics and over 23 absence and complex partials.  Honestly, I lost count.  The seizure lasted 13 hours straight.  I truly thought my baby was dead.  But God had much bigger plans.

When Laycie was 3, at her birthday party, I began to have seizures again.  This time a complex partial took control of my mind and body and left me without control.  Several more have followed since but I haven’t let them stop me.

4 years later, I became pregnant with my 4th child, a boy: Jackson.  At this point, I already knew I would not vaccinate as it is an obvious trigger for my children’s seizures.  I didn’t and his seizures held off.  At 10 months, he began to have Involuntary Breath Holding Spells which trigger Epileptic seizure.

It was at this point that we began to seek genetic testing to find a reason for all these seizures and the link between us because it was obvious this was genetic.  It took over 2 years to get answers.  The first panel didn’t show any genes.  The much bigger panel for Epilepsy did pinpoint a gene for me, Emma and Laycie though not for Jack.  We still have no reason for Jack’s seizures.

Through all of this, I never once considered not having my children.  I never once considered them a burden, but instead a blessing from God.  I never once considered being their Mother a burden either, though sometimes it’s challenging.  But God knew.  He knew what he was doing when He blessed me with each one of them.

For me, abortion was never a thought or an option.  I believe that God will equip us for our needs.  I believe He alone gives us our beautiful children and He alone knows just what we can handle.  I could have never chosen that option as it wasn’t in me.

See even if you have Epilepsy, even if you feel like you just can’t do this Motherhood thing, even if you see more challenges then you may feel it’s worth, don’t give up.  Hold strong to God’s Love.  Know that He’s chosen you for a special mission, a mission of Love.  Choose life.  Choose to have Faith for God will not fail you.

Abortion is the easy answer for us.  It’s promoted to be a quick solution but it’s not.  The ache in your heart is never healed.  The missing child cannot be replaced.  It’s something that will remain in your soul forever.

So I beg you to pray, to search your soul before you make this decision that will affect your life permanently.  I beg you to ask God to show you the truth of the light and His word.  I beg you to allow Him to show you the plans He has made for you.  Though, at first, it may seem impossible God can make things happen that you cannot imagine.

Had I known what I do now about my life and that of my children, I still would change nothing.  My children are a blessing.  They hold my heart and there is nothing I would not do for them.  They truly changed my life.  I know it will be the same for you.

Many blessings,
Dana Lambert – Hodge

Welcome to April {Thoughts From Me}

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Welcome to April!

Our April began with the Devil shining her ugly face at us.  Petty spite and anger from another at our wonderful life became the focus for a few days.  The law has been contacted and shall be handling that as necessary.  I refuse to be bullied, stalked, or slandered any more.  Mama has always said I should have been a lawyer.  Maybe one of these days I’ll listen.

The other month, I posted that I was having writer’s block.  Well, the good Lord has seen fit to allow thing to happen that have given me lots to talk about!  Talk I will with His guidance.

It was brought to my attention that some of you assume my blog is a “homeschooling” blog.  It’s not.  It’s a family-life blog that I write as a journal, to share with others who are like us and to spread the word for Epilepsy Awareness, Involuntary Breath Holding Spells Awareness and the other health issues we face.  This includes my recent battles for my own health with undetermined female bleeding issues.  Homeschooling is a just a part of the mix and always will be.

It was also brought to my attention that some of you don’t know how to pronounce my children’s names.

Winston is pretty simple.  He was named for his Papa, my Dad. Win-ston.  It’s an easy name.

Emmalee is NOT Emily.  It is Emma Lee pronounced all together, though she was named for one of my dear friends Emily.  I just really dislike the “ILY” spelling of that name so I changed it to something I liked much better.  She’s also named for her Great-Grandmother Elma and the Lee for her bio-Dad’s family name.  Her Great Great Grandmother’s name was Emma as well.

Laycie is pronounced the same as Lacy though her spelling is different.  “Lay-cee”. I wanted her to be different so I gave her a unique spelling like her sister.

Jackson is just that: Jack-son.  Simple like his big brother’s name.

Each of these names were chosen for unique reasons for my children after I prayed about them for a long time.  Some of y’all know the story of how I chose Jack’s name when I was unsure about it.  I had a photo shoot that day and when I arrived his name was written on a wall.  It was then and there I knew it was to be his name.  God provides signs everywhere.  Just today Jackson was telling me he is Jackson and not any other name.  God knows who we are meant to be.

Our life is just that.  Our life.  I share it for others who are like us that just need someone they can relate to.  I know there were many days in my life when I felt like no one understood my life.  I know there were others who were like me but I couldn’t find them.  Blogs weren’t a thing then and growing up people definitely didn’t talk about Epilepsy.  Things have changed now.  People are generally more open-minded though there are still many who are not.

Now you can judge me on every single word I post here.  You can bash me.  You can nitpick all I have to say.  But really what good is it going to do? I’m still going to write what I feel.  I’m still going to say what I think.  I’m still going to be me and keep being me.  After all, opinions are like assholes, every one has one.

I, personally, try to keep my opinions on others and their lives to myself for the most part.  I am not here to judge and condemn anyone.  There is a bigger presence for that and we will all face the truth one day.  I’m not the one you need to be worried about because I’m just a little insignificant person on this Earth trying to make it through life just like the rest of you.

So here’s the thing.  You live your life and we will keep living ours.  We are happy, in love, high on life and there isn’t a soul in this world taking that away from me this time.  My children are the light of my life.  They bring me indescribable joy.  As does my husband.

No one’s spite or jealousy or negative remarks will change that.  I know his heart and he has never lied to me.  He has changed from the person of his past and he is becoming the person he’s always longed to be with my help and his determination.  I’ve done my medical research and I will stand beside him and not give up because I know the truth of it all.

“Sometimes the love of your life come after the mistakes of your life.”  (I know mine and Don’s both have.)

We all have mistakes in our past.  Every single one of us. There is no one better than another.  It’s how we choose to live after these mistakes that make a difference.

I have personally chosen to learn from the mistakes of my past and move forward but some people chose to dwell on these mistakes and allow them to destroy them inside instead of embracing what God has blessed them with.  They become so wrapped up in the “wrongs” they fail to find the “rights”.  They feel owed.  But let me tell you.  None of us are owed anything from one another.  None of us are owed anything in this life.

We all start from nothing and we are hear to learn God’s Love, Mercy, Grace, Faith, Hope and all the things He wishes us to know.  But even He doesn’t owe us anything because we were given the greatest gift we could ever receive: Life upon the Death of God’s Son.

God Forgives.  God Loves.  God gives Grace in our mistakes.  God gives Mercy even to those who we feel do not deserve it and He expects us to do the same.  Not an easy thing, I know but it can be done.  I personally live my life trying to do just these things.

It’s easy to hold a grudge.  It’s easy to let the hatred we develop when we feel wronged overtake us.  It’s hard to follow God’s guidance and allow ourselves to let go, lay it as His feet and Forgive others.
Life is a learning process.  We come in this world to learn, to develop, to follow the things He is teaching us.  Sometimes we fail.  Sometimes we succeed.  But no matter we continue to live.

Being consumed with the life of others does us no good because we are here to live our own lives.  Being upset because someone has gotten the better of you and acting out does no good because that person is still going to get the best of you in the future and their words really should not matter.  We are all just people.  Just here living.  Make the best of it and let go of the rest.

God bless all of you,

Dana Lambert – Hodge

God’s Nudges {Epilepsy Awareness}

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Sometimes God alerts us to dangers that may be happening around us.  I’m always thankful for these little nudges that let me know when I need to pay extra attention.  Especially when these little instances have to do with my children.

Last night, I tucked my kids into bed.  I said their prayers with them and kissed them.  Then I went to take my bath as usual.  Shortly after, I began to relax, I heard Laycie cough.

It was an unusual thing, as once she’s out, she’s usually out for the night.  But last night, I just felt different and I knew I should check on her.  So I did.

She was asleep in her bed, snuggled in but something told me to wake her anyways.  When I did I found she had the paths of tears coming from both of her sweet eyes.  As she opened her eyes to look at me, I saw her eyes were red.

She had no idea why I was waking her.  She didn’t know she had coughed.  She didn’t realize she had been crying.  I asked was she okay and she responded but her answer didn’t make sense.  I’m not sure if she had been dreaming or if this incident was seizure related.

This is the life of Epilepsy.  Outwardly, you see a child who appears normal.  A child who plays with her siblings, sings, jumps, runs like normal.  But beneath the surface the normal child ends.

From my experience, I have no doubt this was seizure activity for Laycie.  Her emotions, her responses on waking, her movements all point to something being “off” for her.  It wasn’t a seizure itself but activity in the brain that can lead to a seizure if not recognized and paid attention to.

Sometimes we miss these small signs that the Monster is nearby.  We don’t always catch those little things before the big ones happen but they are important to learn and to recognize.  By catching her small responses, I am able to snuggle with her to calm her.  I am able to see to it that she rests a little more, sleeps in and takes a nap if she needs it the next day.

Sometimes just simply laying beside her and holding her can help her drift into a deep sleep that allows her tiny self to reset.  This simple reset can help keep her from having a major seizure and that’s always the goal.  If she’s restless, we can find a relaxing activity which for Laycie is usually just being held and shown love from Mommy.  I can also apply our essential oils, either our frankincense roll-on or our lavender, to relax her and help her drift into sleep again.  Just these simple things can help.

There have been so many nights that I have laid awake in the last 14 years as a seizure Mom simply listening to my children breath.  There have been so many days when I have watched my children like a hawk judging what for us is seizure activity and what isn’t as well as what’s different for this child versus their sibling.  Epilepsy manifests into each individual person differently so it’s important to learn these small points, as well as the larger triggers for yourself or your child.  Learning their personal quirks and triggers can help you to stop the onset of a major epileptic event for that individual.

And always pay attention to those little God nudges.  Don’t second guess His reasons to alert you.  Go seek out what it is He wishes to make known to you.  You simply never know when one of those nudges may save your life or that of someone else you love.

God bless,

Dana

And Then God Answers… {Epilepsy Awareness}

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Last week, I was at my wits end trying to find something to write about on our little blog.  My brain was just blocked.  No ideas would come.  I was seriously about to give up on this writing thing and just give y’all nice little Wordless Wednesday Images and reviews for the rest of my blogging career.

But God, wouldn’t have it!  He wants me to write.  He’s given me a voice for a reason.  To share, to teach, to show others our life.

Recently, I was on Facebook as I often am throughout my day, and my attention was drawn to several posts within private groups that I am in.  Those responses generated messages in my private inbox from those who wished to know our story a bit better. And since I love to talk and share, I couldn’t turn down the chance to give hope to others.

Through this, I was reminded just how important it is to write and share our journey with Epilepsy.  God spoke… He really yelled at me and asked why I wasn’t writing and sharing this testimony that He’s given to us.  And my honest answer is that I just don’t know.

If you’ve read my past posts on Epilepsy, then you know I don’t find it to be a burden but instead a blessing.  I know we could have a worse disease or disorder.  For our family, Epilepsy is challenging but it is our life.

For 37 years, I’ve had some relationship with this disorder. (I choose to call it a disorder while some classify it as a disease.  To each their own.)  It began with having seizures as a child, then again as an adult.  When Emmalee was 3 months old, it changed to being an Epilepsy Momma and later to being an Epilepsy Momma of 3 with E.  This led to me being an advocate for Epilepsy and an Epilepsy blogger.

My reason for sharing is that I want my children to know they are not alone in this.  I want others to know they are not alone in this.  I want the World to know that it’s okay to have Epilepsy!

Growing up, my Mother didn’t tell the world I had Epilepsy.  It was something you kept hidden so others didn’t judge you.  She would tell my teachers and advise the school but that was pretty much it.  She made me aware and prevented me from doing many things.  I wasn’t allowed to spend the night with friends or do activities that could cause me to hit my head.  I was pretty sheltered and protected by her.

As a Mother, I understand why she chose to parent me that way.  I also knew what I wanted to change for my own children.  I didn’t want my children to be kept from doing anything they truly wanted.  I also didn’t want to put them through the public school challenges of dealing with teachers who just didn’t understand their mental challenges in learning, so we chose to homeschool.

My mother was lucky in that out of her three children, she only has me with Epilepsy and I was her baby.  In my own family, I have my oldest son who doesn’t have Epilepsy and my following three who do have some form of the disorder.  All of us are uniquely different in our Epilepsy but I will discuss those differences later in another post.

But for now, this is what has inspired me.  God has led me to share my life story, our life story, in order to help others.  I hope you enjoy our posts and find them helpful as we hope to inspire you.

God bless,
Dana

About blogging… {Thoughts From Me}

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Some days I have no idea what to blog about so then this becomes a sort of diary for me.  An  outlet to get out my frustrations.  A way to let go and share myself with the world.

Most days I have no idea where these posts are going to go.  I just let my fingers type and my mind release it’s thoughts onto digital paper.  As with most of our life, I go with the flow of things.

The problem with this is that there is no real stability in my blog content.  That’s not necessarily a bad thing but just not a great thing when you’re a blogger.  There is no particular spot for my posts.  There is no particular format for my posts.  There is no particular topic or style or method for my posts.  They just are.

As a blogger, as a writer, I would prefer to see myself writing more interesting posts to share with my readers.  I would prefer to see myself more organized in blogging and talking about life, homeschooling, even Epilepsy.  I would prefer to find my spot in this blogging world, claim it for myself and let it build into something beautiful.  I know that comes with time and effort though.

I have many friends who make blogging look so easy and in some ways it is when you have the content provided, such as in providing reviews and information to the public.  But when it comes down to the real life heart of blogging, it becomes harder to get past the chatter and into the meat of writing.

So this months goal is to just get back to writing.  Put pen to paper and go, or in this case, fingers on keyboard to digital paper and type.  Both end in fabulously unique results and that’s my end goal.

This month is Epilepsy Awareness Month.  As you all know, it’s a subject close to my heart as three of my four beautiful babies, along with myself have lived with Epilepsy for most of our life.  This month I will be sharing more about our life with Epilepsy, as I do often throughout the year.  Please message me if you have any questions you would be interested in having me answer for you.

And as always stay tuned for the next post…

With all my love,

Dana

July Update {Epilepsy Awareness}

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It’s been a while since I updated.  Life gets busy and there is just no time for getting on here right now.  I would love to change that but I’m not sure how to make that happen.

There’s a lot that I don’t post, that I don’t talk about.  I do my best to focus on the positive and to avoid the negative.  But sometimes that’s hard to do.  We all want that perfect life, to put on the front that everything in our lives is glorious and amazing but when it comes down to it, we’re just putting on a face that is not real.  That’s the face I’ve had plastered on for a while.

It’s hard being a Mom of four kids, even harder being a Mom of kids with Special Needs with 3 of the 4 having Epilepsy.  It’s hard to wake up praying that this morning, on this day, your child will not have a seizure.  It’s hard holding your breath when your son begins to cry, to rush to console him and meet his needs so he doesn’t drop into an Involuntary Breath Holding Spell and have the accompanying seizure.  And when it does happen, you simply pray for it to be done and over with so that as a parent you can return to breathing again.

Yea, I hold my breath a lot.

You cannot understand my life.  You cannot understand what it’s like to watch your child lay lifeless.  You will never understand what it is like to see your child lost in a seizure that lasts 13 hours straight, wondering if the medical team is going to get it to stop with the multiple medications they’ve injected.  You will never understand what it’s like to wonder if your child’s seizure will ever stop, if it will cause brain damage or other irreparable damage.  The only ones who do understand the truth of this are those who love and care daily for someone with Epilepsy.

The real truth is that any day I could have a seizure that leaves me laying in a vegetative state, or dead.  Any day my children can have a seizure that leaves them the same way.  I hold my breath with every seizure that hits us.  I patiently wait for them to end.  I wait to see what damage is done and I’m praising God every time it’s over with no issues.

As a family, we’ve been extremely lucky.  There are others who aren’t as lucky as us.  There are many who don’t make it through.  I don’t know why God blesses me to because any day that family that loses their loved one to a seizure could be us.

My biggest fear is losing my children.  My biggest fear is having to bury one of them and never being able to love and hold them again.  I know one day I will see them in Heaven but it doesn’t ease the missing of them here on Earth.  Every day I pray I never see this fear come true in my life.

This is my day to day.  At this point, the kids are well.  Laycie is controlled on her Lamictal with no rashes and her appetite has returned.  Except for her ADHD being aggravated a little and her 7 going on 27 attitude, she’s doing wonderfully.

Jackson is currently off medication.  His doctor was hoping he had outgrown his IBHS but he hasn’t.  With the stopping of medication, his IBHS has returned along with the seizures.  We are waiting for a repeat EEG next month before attempting medication again.  I’m praying he does well until then.

Winston and Emmalee are doing very well.  I wish time would slow down because they are definitely not babies anymore.  Kids grow up too fast.

Laycie’s genetic results came back.  She has four possible abnormalities but one particular that the geneticists believes may be our familial culprit for Epilepsy: gene PRRT2 which is known to trigger seizures in children.  It is now being tested against my blood sample to see if it’s a viable choice.  Determining this gene allows for us to have better treatment options for now and also future generations and that truly makes me excited.

Well that is the update for now.  Not much else has been happening.  Until next time…