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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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seizure monster

God’s Nudges {Epilepsy Awareness}

February 22, 2017 by Dana

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

Filed Under: 2017, Epilepsy, Epilepsy Awareness, epilepsy blogger, Epilepsy Mom, Life with Epilepsy, living with epilepsy, seizure life, seizure monster, seizures suck

My Boat is Not Your Boat and Other Thoughts On Epilepsy {Epilepsy Awareness}

January 4, 2014 by Dana

All night I have been torn over whether to write or not to write.  I can’t sleep – I am restless.  The new year has not been the greatest so far and I’m only 3 days in.

3 days into the year and we are already battling with the Epilepsy Monster again. We left around 5:30 this afternoon to take a boat to a friend who asked us to bring it.  It was something we needed to get done and I wanted it out of the way so our weekend would be free.

Fast forward to 10:30 when my phone rang.  My sweet Emma was frantic on the other end.  “Mommy come home!  Jackson’s having a seizure.”  My heart stopped.  Dadwas dead asleep beside me.  He had fallen asleep while we were watching a movie at the friends.  He hopped off the couch so fast, he almost fell across the friend’s child laying in the floor.  We hadn’t even dropped the boat off the back-end of our Tahoe.

I ran out the door but had to go back because I left my coat and it’s freezing outside.  All I could think is how far away I was from my sweet Jack.  I called my Mom back – she had hung up not long before.  She had told me he was struggling to breath and I could hear his other Grandma in the background.  They were wondering about a rash that was breaking on him – it was the blood vessels showing from his seizure.

It wasn’t long we were on the road – that was by far the longest drive in a long time, even though I know we were passing the speed limit.  It’s an hour to my friends house from mine – an hour back to mine.  I called to check on the baby again when we were halfway home.  She said he was doing better – calming down and tired.

This image belongs to Proverbs31.org

We stopped for gas – it seemed like forever but we finally made it home.  Jack was asleep and looking normal thankfully.  His white hair shining in the light of his Grandma’s lamp while he slept on her chest.

Laycie was still awake laying beside him and I could tell she was scared.  Jackson seizures are a reminder of her own.  It terrifies our entire family when they happen.

Winston was well-passed out in the other bedroom while Emma was still pacing the floor wide awake.  My strong, brave girl.  I cannot even begin to fathom the strength that lies within that child.  She suffered these same type of seizures for years and now she watches as her sister and brother do the same.  She’s the first to grab the phone and call me.  She lets me know detail by detail of what’s going on.  She doesn’t exaggerate, she simply tells what’s happening.  She’s also the first to grab the Diastat and have it ready to go – ready to save her baby brother or her sister’s life.

Even though it scares her, she keeps her cool.  “I hate to see him suffering”, she tells me, “I hate to see him seize.  He’s just a baby.”  She is so right – I’ve hated to see this happen to her, her sister and her brother for the past 10 and a half years.

It scares me.  I admit that.  I was never scared of this until Jackson came.  I never lived in fear with it but this, this uncontrollable Epilepsy he has is the worst yet.  Just when you think you have it handled, you realize it’s far from it.  FAR from it.  I long for the easy days I had when Emma was fighting this battle and pray to God to take away this devil we fight with every day now.

I hear people say every day who live with this disorder that we are in the same boat – we all fight the same fight.  I used to say that very thing and be the most positive person when it came to Epilepsy.  I have fought this fight for 34 years and now I have three beautiful children who are fighting it.  I can say that no we are not in the same boat.  We each have our own battle to fight with Epilepsy.

My boat is not your boat and I cannot understand what your child suffers – you cannot begin to understand what my life with 3 is like, except for following it on this blog and even then it will be a challenge for you.  You have no idea how terrified I am that one day my baby girl won’t wake up or one day my baby boy’s breathing won’t return because of his seizures, because of his Epilepsy.  You simply have no clue.

I don’t even pretend to understand anymore what each of my friends’ children who live with this and so many other disorders go through.  I simply stop and I pray when I hear something is going on.  That is all that I can do – and look at my own babies, thanking God that it is not them this time.

That’s the cold-hard truth.

I love all my friends and their precious children and I wish more than anything that none of them had to ever suffer again but I don’t know what their personal battle is and I cannot fight that battle for them.  We are each on our own with this Monster, fighting this battle even though we may pray together for it to stop.

I will never stop advocating for Epilepsy.  I will never again sugarcoat this life we live – this IS what living with Epilepsy is like.  You can like that or not – this is the truth of it.

It’s not a kind disorder – it’s hard and it’s cold and it doesn’t care what age you are or what life you have to live.  It just is and it consumes everything – it takes over and it’s not controllable and just when you think it is, it strikes you down to remind you that we are NOT in control of it.

And in the end, all you can be is just thankful to God that you have been blessed to live.

I am.

To read more posts from me about living with Epilepsy, please visit our Epilepsy Awareness section of the blog!

Filed Under: 2014, another seizure, Epilepsy Awareness, I hate epilepsy, Life with Epilepsy, living with epilepsy, seizure, seizure monster

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