Epilepsy

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

And Then God Answers… {Epilepsy Awareness}

January 27, 2017 by Dana

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

July Update {Epilepsy Awareness}

July 7, 2015 by Dana

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…

Epilepsy Awareness Month 2014 {Epilepsy Awareness}

November 2, 2014 by Dana

Here we are in November and it’s Epilepsy Awareness Month again. It’s time to reach out, share and spread the word. If you know me and you read our blog then you know I do this all year, not just during November.

I spread awareness for my children. I share our ups and downs of how living with this disorder daily affects our lives. Living with Epilepsy really is a way of life.

Living with Epilepsy and raising three children with this disorder is probably the hardest thing I have had to do in my lifetime. Watching my babies grow up and not knowing if they will be here with me tomorrow or even in the next hour is one of the worst things I have had to come to live with. We are not promised tomorrow and nothing makes that more real than seeing your child lay seizing while you can do nothing but pray for it to pass.

It’s hard for my children too. Watching their siblings and wondering if this will be the final time they are able to see and love them is hard. Not knowing when the next seizure will happen or even what will trigger it is hard as well. They are constantly on the lookout for one another.

Then there is being the person who has Epilepsy. Not knowing when a seizure will happen. Not knowing what is happening to you when they do happen. It’s traumatic and indescribable.

Epilepsy is such an unpredictable disorder. We never know when it will show up. It comes unexpectedly, and usually in the least convenient of times.

This is our life and what we live with every day. It’s not for the faint of heart but just to live and love makes every moment worth it. This month we will share about our life with Epilepsy and through the year to come just as we always have. Look for more posts to come soon.

Balancing Life {Epilepsy Awareness}

July 14, 2014 by Dana

It has been a year since Jackson’s battle with Severe Involuntary Breath Holder Spells with Epilepsy began. Time has passed quickly, yet there are days when I still feel suspended in time. This year has been hard on our family but we are still moving forward.

It’s hard for me to believe that a year has passed since this journey began for us. I can tell you that each time you find out your child has some disorder, it sucker punches you deep in the gut. Having multiple children with health issues doesn’t make it easier and you genuinely hope with each child that they will be healthy and “normal” like children should be.

We are finally at a point in our lives where we are able to breath again and are finding balance. Jackson’s last medicine increase has his breath holding spells controlled for the most part and seizures have decreased with the decrease of IBHS episodes. I could not be more thankful for this reprieve no matter how short it may be.

When you have children with disabling health issues, it becomes hard to function and plan your day to day activities because you do not know what to expect or even how to plan since you cannot guess when a seizure or spell will happen to them. Events get cancelled, schoolwork is put off, living becomes second to surviving. This has been our life for the last year.

At this stage, I’ve learned that seasons are short and each quiet period must be packed with catching up on the things we’ve had to put off. Housekeeping is done in these time periods, restoring balance to the home so that we are ready for the next unsteady path. Schoolwork is also done during these times so that when needed breaks come we do not fall behind. Life and living come first for a while and surviving does become second even for a brief time.

After living this year surviving, we are ready to live life again and move forward, hoping the days remain balanced and settled for a while. Whatever happens, I will take what I can get and enjoy these moments while we have them for they are gone all too quickly.

E is for Epilepsy {Blogging through the Alphabet}

June 2, 2014 by Dana

I totally spaced last week and missed my D is for… post but I will go back and do that one soon. We are now on letter E and for us it is and will always be

E is for Epilepsy!

If you are a follower of our blog, then you already know we have a multi-generational family who has Epilepsy. I have had it since I was an infant and now three of my four babies have it as well. It’s a huge part of our daily lives and I use every post I can to help others understand how we live with it.

You see, starting out as a parent, I never thought I would be raising three beautiful children with this disorder as well. My oldest child missed the Epilepsy boat and I am truly thankful as he is a huge help with his siblings. When my oldest daughter came along, I thought “okay, she’s got it and that’s that”. Then came my baby girl and it was truly a surprise to me that she also developed this disorder. It was something I never expected, thinking that only one child would have it.

Imagine my surprise when my last child began having seizures as well! I’m thankful that by this point, I was aware that it was a possibility though I had hoped he’d also miss the Epilepsy boat like his older brother. We just were not that lucky.

To be honest, I guess you can say our lives revolve around Epilepsy. We are constantly on the watch for seizures. We have to plan our days around my children’s triggers – the girls often have seizures in the morning right after waking and the baby usually has his episodes at night.

When we aren’t watching for seizures, we are sharing about them. I tell everyone I know about Epilepsy. I advocate the right way to help those who are having a seizure and share my knowledge as much as I can, both online and in real life. That is the only way the stigmas of this disorder will change.

I enjoy telling others our story and I enjoy blogging about Epilepsy so that others can understand what our life is like through this blog. To learn about us and about Epilepsy, all you have to do is look for our Epilepsy Awareness tab at the top of our page or simply search our blog using the side panel and the keyword: Epilepsy. You will find tons of posts about our day to day journey with Epilepsy and I can promise you there will be many more to come!

Thanks for joining us! Until next time…