Sunday, January 26, 2014

A Very Quick Update!

It's been a rough week so I'm a bit behind on my post for the week.  Jackson has had two seizures and Josh is sick in the bed.  Not completely sure what's wrong with him.  Laycie's also had a mild cold so I ended up having to cancel the boys' birthday bash for the weekend.  I'm planning to make up for it soon.

I'm exhausted simply because of all that's going on.  It's really taking it's toll.  I have so much to do but my family's health has trumped anything that I need done.

Luckily, today Laycie's feeling better but Josh isn't and Jackson still breaking through with his seizures.  I did a little shopping today and found Laycie some new boots to keep her feet warm for the winter as she goes back and forth between our home and her Grandma's next door.

I also found Jackson a new Taggie blanket and also a snuggly Puppy blankie.  He loves them both.

I also found him a pair of flip-flops that are just a bit too big.  Lately, he's been wanting to wear everyone's too big shoes.  Great for his play-acting but not so great for a big boy who is just beginning to learn to walk.  He loves his new shoes and the fact they are just a bit too big!  He's had so much fun walking in those this afternoon.

I'm short on time and energy so this post is going to be very short.  Please say a prayer for our family's health and for my sweet Jackson to feel better soon.  Thanks y'all.  Until next time...

Wednesday, January 15, 2014

Essential Oil Images for Epilepsy

With the kids lacking so much control for their Epilepsy and a few other health issues like ADHD, OCD and sleep troubles, I have recently been researching other options for treating their medical needs outside of medications.  This has led me to researching Essential Oils for treatment and I'm so excited by what I am finding.  To keep track of what I can and cannot use for children, I've created a few images listing these things.  Please feel free to use these for yourself, print or share but please know that I am NOT an essential oils expert, nor am I an aromatherapist or a doctor.  I'm only a Mom who is trying to prevent seizures for her children.

Here go the Essential Oil images I have created thus far: 




New Epilepsy Awareness Images

I decided to create some new Epilepsy Awareness images tonight.  Here they go:











I hope you all enjoy these and are able to share and spread Awareness for Epilepsy!


Friday, January 10, 2014

Organizing Our Home {Update}

It's a new year and our year this year is all about organizing!  I've been busy busy busy working on the house, putting things in order.  I have to say, I'm quite enjoying it.

Having a place for things in our home makes a big difference in our day to day.  I enjoy knowing where to place things as they come into my home.  It's nice to be able to put it where it goes.

The kids are quickly following my lead.  They too enjoy knowing where to put things.  They find having a place for everything is much easier on them than just putting it anywhere they can find.  They enjoy being able to know that something they put away is there the next time they need it.

This week, I'm working on my bedroom and doing several tasks in the kitchen following the routines shown on FlyLady.  By the end of this weekend the bedroom will be done, as much as I'm able to get done until I can purchase some new organizing essentials and furniture.

So that's what's going on around in our life right now.  What are you organizing for the new year?

Saturday, January 4, 2014

My Boat is Not Your Boat and Other Thoughts On Epilepsy


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.  Josh and I 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.  Josh was 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!

Thursday, January 2, 2014

2014: Word of the Year

I admit, I could not remember my word of the year for 2013 so I had to go back and look it up.  It was DRIVEN.  At the time, I could not have even begun to imagine the effects of that word on our life through the past year.

DRIVEN: It's had so many meanings this year.  We have driven from home to Charleston to home over and over again.  We have traveled these miles carrying each of my four children to different doctors.  Sometimes coming home with great results, sometimes being placed on the back burner because of our life with Epilepsy and most of these trips were because of our Epilepsy.

DRIVEN:  The past year has been one of the hardest for our family.  We had to be driven to overcome all the challenges and obstacles that have been in front of us for the year.  It was hard to keep it all together but we have managed and we are praying in this next year, we won't need to be so driven to overcome all the things as we have been for the past year.

DRIVEN:  It's what my baby has been all year.  His immense strength amazes me.  He's fought to hard all year as his sweet body was wracked with uncontrollable seizures that he didn't even realize were going on.  It's what my sweet daughter has also been, trying to maintain control after her seizure in June which still effects her thoughts daily.  Sometimes it's the aftermath that's worse than the actual seizure.

Yes, this year has been a rough one and our word for last year definitely fit us well!!  Our word for the next year is OVERCOME.  We will overcome the challenges of the last year.  We will overcome the challenges ahead of us this year.  We will manage our lives better, attempt to have better control of ourselves, our homes and the little things that life throws at you when you least expect it.  That will be my goal and dream for this next year.

Through Christ we can OVERCOME it all!

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