living with 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

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.

Homeschooling While Living with Epilepsy {Epilepsy Awareness}

August 27, 2014 by Dana

Over the years, we’ve become great at homeschooling regardless of what is going on in our lives. Let’s face it, living with Epilepsy leaves our day to day world pretty unpredictable. Our schedule and our schooling style must be extremely flexible to even make it through.

I suppose this is how we became Eclectic and Unschoolish in Homeschooling style. Originally, I began this adventure with the hope of having lots of structured learning. I really wanted a repeat of Public School at home in the early days. Over time, I came to realize that type of learning wasn’t going to work for us due to our needs at home.

I quickly began to research other means of learning and I simply stopped with the structure. We simply learn now – however that manages to happen. And you know what? They do learn and they absorb twice as much learning than they ever did in our structured learning days.

Our homeschooling days are relaxed. We do projects that can take weeks. We take our time working on them because we have no need to be rushed. Sometimes the kids don’t even realize they are learning. It’s afterwards that they come up to me and say “Mom, did you know we just learned this?” Oh that sneaky Momma! “Yes, I sure did!” I love those moments when it all sinks in the most.

In learning this way, we are able to stop what we are doing when a seizure happens. We can take a day off. We can rest as we need to. I can easily say that our doctor’s appointment can be scheduled at any time of day without interrupting our homeschooling because we make it fit to our day.

I like to think we have taken our learning to a new level. Sometimes it’s delight-directed in that I set up lessons to learn about things that the kids are currently interested in. Then their are days when we do lessons that correlate with our curriculum, such as learning about plants in spring and ice in winter. Or reading the next book in our language arts lessons. We have many different choices of things to do every year and it just works for us.

No matter what happens in our day and no matter what pops up for us, the important thing is we never give up on Homeschooling. We never give up on learning. We work through the bad times and the good as well. It’s really just a way of life and it’s become a large part of our life. Once you take out the ideals of something different, it becomes easier to make it through the process.

I believe adjusting your homeschooling to your needs may be the hardest part but it can be done. You can Homeschool through life, through the good and the bad stuff. It just takes a bit of maneuvering to make it happen.

We are linked up with the Schoolhouse Crew for the Homeschooling… When Life Happens series. Click the image below to read what others say about Homeschooling… When Life Happens!

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.

Life is a Blessing, No Matter the Challenges {Epilepsy Awareness}

February 2, 2014 by Dana

Our life and our days revolve around our life with Epilepsy. As a child growing up with this disorder, I was never concerned because my Mother protected me. As a parent raising children who have Epilepsy, I am constantly concerned for the health of my beautiful children.

It’s not easy being on either side of this disorder: both as a person with Epilepsy or a parent with Epilepsy. I’m thankful that I have mostly outgrown the effects of this disorder, that my oldest son, who I often forget to mention, doesn’t have Epilepsy, and that my oldest daughter has also outgrown her seizures for the most part. That doesn’t make this life any less challenging to live.

I often find a hard time focusing on the day to day because I’m so overly consumed with waiting on the next seizure. I often forget things because my brain is always on Epilepsy overdrive. My constant worry is that one of my three children will have a seizure that day and that they may not come back out of it. Even though Emma has outgrown her seizures, they could come back at any time with any traumatic event.

This is our life and most days it’s hard for me to talk about in person, so I come here to blog it — I can share, get my thoughts and feelings out without having to be face to face with someone to do that. I am able to talk, really talk and express myself, our ups, downs and fears through our blog. It’s been a real blessing to be able to share our life with others, to show them a small peak into our world and say “Hey, this is where we are, what we are doing and how it’s all going for us”.

Life is a gift no matter how challenging. It’s a gift that cannot be replaced and is so short to live. We must live that life to the absolute fullest and never miss a minute, even while given challenges like living with Epilepsy.

I have to say if my Mom taught me anything while raising me throughout my life as a child with Epilepsy, it is to embrace my life, to allow my children to live their lives to their fullest potential and to let no one hold us back from that. And I do that for my children every single day. I’m thankful for the gift they are in my life and even for this dreadful disorder which fills our days and keeps them busy. I’m thankful for each minute, each second with each of my children as they are also thankful for those seconds with their Mother every day. Life is the real blessing to live.