blessed with epilepsy

Laycie’s Story {Epilepsy Awareness}

November 9, 2013 by Dana

I’m sitting at home today, watching Laycie, my 5 year old daughter, play outside with her big brother. Sometimes I simply cannot believe how much she has grown or how far she has come in 5 short years. She is one of the many things I am thankful for.

It’s hard to believe that at 4 months old, my perfect little girl began having seizures. At 4 1/2 months, Laycie’s medicine failed her and she went Status Epilepticus. I will never forget that day.

Laycie was so tiny. She was the smallest baby I gave birth to. She was born via c-section on April 11, 2008. It was a beautiful day and the surgery went wonderfully. I had a healthy, precious little girl.

Her first few months went smoothly. She increased in size and had a healthy appetite. The only thing wrong was that Laycie appeared a little delayed in rolling but it wasn’t anything I was worried about at the time.

It was hard to get an appointment with a good pediatrician in the Upstate of SC, so by the time I was able to get Laycie in for her first series of vaccines she was 3 1/2 months of age. At that time, I had read a lot on the vaccines and I wasn’t sure I even wanted her to have them but following the tradition of society, I went against my instincts to have her vaccinated.

Two weeks later, my sweet girl had her first seizure and though I know her Epilepsy isn’t caused by the vaccines, I have been told it can be triggered by them. Laycie began seeing a neurologist in Greenville Children’s Hospital who started her on Keppra. It seemed to work wonderfully for her. Her seizures were controlled and she was “back to normal”.

Two weeks later, her seizures hit so quickly and unexpectedly that the day still feels like a nightmare. Laycie was in a steady set of seizures for 13 hours straight. She had 9 tonic clonics that day; I lost count of the amount of partials she was having. I still question if any damage was done from her lack of oxygen and the amount of seizures she experienced in that one period of time but her doctors assure me there have been no major after effects. We have not experienced a day like that since but it’s still a nightmare and a huge fear for me.

As I watched Laycie lay in her crib at Greenville Children’s Hospital, I remember praying to God for him to not take my baby girl. I remember asking for him to stop the seizures and her suffering. My heart aches just thinking about those hours that I sat watching wondering how this was going to affect my baby girl, wondering if it would ever stop. I have never felt relief like I did at the end of that 13 hours span when my baby girl opened her loving blue eyes and cried for me.

Laycie is 5 now. We are still battling this monster called Epilepsy. She doesn’t let it get her down though. She’s just as strong today as she was at 4 1/2 months, always blessing her Momma and her loved ones.

We are lucky. My heart aches when I read of other Momma’s who watch their sweet babies suffer with seizures. The unknown becoming their worst reality and wondering when the next episode will strike.

I’ve known at least two beautiful children who God has called home from this disorder, only online but their stories none-the-less are carried daily in my heart. I ache for their kind Momma’s and know it just as easily could have been me in their shoes, mourning the loss of my sweet babies. I can only imagine their pain and I pray every day to never know it, to never share in it and that this monster will just go away.

It’s still here, lurking and waiting to strike again. I can build hope on the days when my Laycie is playing normally outside and pretend but I can never let go of the thought that she could just as easily fall prey to the Monster again, rendering her body useless while she fights the seizures attacking her brain.

Have Faith, Momma’s – Faith that God is with our babies, that He carries them within His arms through every battle they face with this Monster. Have Faith that He has given them each a purpose on this Earth and He will not call them home before their time. Have Faith that in the bigger plan, these seizures have purpose though we cannot see what they are at this time.

Have Hope, Momma’s – Hope that some day soon there will be a cure or at least an end to the battle with this Monster. Have Hope that our children will some day be blessed to know what it is to live a normal life, even while we watch in wait for the ever-lurking Monster called Epilepsy.

Life with Epilepsy {Epilepsy Awareness}

June 21, 2013 by Dana

I could keep quiet about Epilepsy. I have for a long time. I could let it go and move on, keeping all that I feel inside. But what good would that do? And who would I be helping by not sharing my thoughts and feelings.

Speaking out lets others know they are not alone. There are many Mother’s out there who go through the same things I do daily. Many who deal with a lot more than I have ever had to with my children. I speak out so they know they are not alone.

Over the years, people have commented how I should work. How can I work and leave my daughters who could drop into a seizure at any minute? This disorder doesn’t work on a schedule. You can’t see it. You don’t know when it will strike your child down.

And I’m sorry but bosses don’t understand when your child simply isn’t feeling well. They don’t understand when you call 10 minutes before work to say “My child just suffered a Grand Mal seizure and I can’t make it into work today”. Or for a few days for that matter.

People also tell me “oh you need to put your kids into school”. That’s always easiest to think. But in reality, if I’m dealing with my one sick child, I can’t make it to school to deal with my well child. I can’t make it to the bus stop to see they are dropped off or picked up. I can’t deal with a school system who’s focus is on attendance, not the fact that my child or his/her sibling was sick so we just couldn’t make it in.

Then there is the stress that school in a classroom with 30 other students brings my child. I know what it was like to be in Public School and have Epilepsy. It was not fun and my teachers were rarely understanding even when they tried to be.

I did enroll Emmalee in public school briefly. Every day she came home tired and frustrated. She began having migraines because of the long hours, lack of structure and lack of relaxation time after school was done. Her seizure activity spiked and I quickly took her back out.

I know everyone can’t live life like we do. I strive to be there for my girls, for all my kids, but that’s not possible for every family. Neither is homeschooling. I am thankful I can do these things and be with them. I am thankful I don’t have to leave them alone. I never try to begrudge those Momma’s who have to do otherwise and I support everyone no matter.

These are simply the reasons that I do the things I choose. It’s worked out well for me. Josh works hard so that I can be here for the kids, so I can be here when Laycie has a seizure.

Until you have a child with a medical issue, it is hard to comprehend what life is like for a Momma who does have one. You can’t walk in shoes that your feet have never fit into. It’s my hope with my blog and my Epilepsy posts that I am helping others to not feel alone and I’m helping others understand what we as Special Needs Momma’s go through every day.

If I can encourage one Momma to not feel alone. If I can help one Momma find her voice in this fight. If I can help one Momma feel blessed even in the light of darkness than I have met my goal.

Epilepsy Is Not Contagious {Epilepsy Awareness} Day 3

November 3, 2010 by Dana

As I was sitting here, trying to think of a topic to write on today, I read this on the Epilepsy Foundation of Arizona’s Facebook status: Fact of the Day: Epilepsy is never contagious.

And it’s not. You can’t catch Epilepsy. It just happens. Sometimes it’s triggered by some major accident. Sometimes just from a simple change in the body. Some people inherit it, as my daughters and I have.

Epilepsy is NOT a disease, it is a disorder. It is a unbalanced electrical reaction of the brain. I describe it as computer overload. When a computer is overloaded, it will crash and shut down. This is the same reaction the brain gives when a seizure happens. The brain processes and overloads, then the body shuts down or rather seizes.

For my girls, this happens when they are learning a LOT of new things. It can also happen when we’ve had an exhaustive weekend like this past weekend was for us. The girls will become overly-tired and I begin to notice their body fighting to stay on track. They will have mild jerks or twitches while awake. They will act “spacey”. They are excessively whiny and nothing can make them happy. At their worst, they will fall into a convulsive seizure.

We have dealt with this disorder actively for 7 years now. I know the signs and when I see them, I have the girls take a “rest” day. We lay around, rock, love on each other, watch tv, read and do simple activities. We also nap and go to bed early to allow our bodies plenty of rest. Doing these things usually keep our seizure activity low and gets the girls back to normal within a day or two. Homeschooling makes this easy for us to take “rest” days as needed.

Epilepsy never completely goes away. It’s always there, even when it’s outgrown. It could reoccur at any time but it is NOT contagious. It doesn’t rub off on you when you bump into my child. It doesn’t contaminate your skin when my child is seizing and you touch their drool or vomit, as the case may be. And it is not caused by Demons as some people believe (yes there are those who actually do believe that).

Epilepsy is a disorder that can be controled with routine, structure and most of the time with medicine. Sometimes surgery or a special diet helps to control it (we will discuss more about those later).
Dealing with this disorder is an everyday part of our life. Each day we wake up is a blessing and each day we wake up without any signs of seizure is an even bigger blessing. Seizures happen unexpectedly, so we must always be prepared for one to suddenly “pop” up. This is our life.

Days Like This {Epilepsy Awareness}

October 23, 2010 by Dana

There are days like today when I wake up to find my babies are all awake and waiting for me to guide them. There are days like today when I find my sweetest two year old shaky and stumbling, in need of her medicine to fight off the seizures that are just on the edge of her mind. There are days like today when I’m the only adult home, the only one dealing with all that goes on in our life. These are the days that make up my life, the days that encourage me, scare me, show me how strong I am, all at the same time and in the same moments.

When you have a normal child who doesn’t suffer from anything life-threatening, you can take things for granted and look at the world completely differently. It’s a blessing that is easily overlooked. I know because I did it once, when it was just me and my sweet boy. There are days when I long for it to be just me and him again because it was definitely so much easier back then. I could lay in the bed with him and snuggle. I didn’t have three kids to worry about, only him. We could read without interuption and play games, just he and I. Truth is, I barely remember those days because they went by so fast and they were quickly replaced by days of frantic what-if’s and girls needing to be held because they were unsteady. My son is my strength, my inspiration, the one I can count on to be just fine on the days the girls aren’t. This disorder (Epilepsy) has cheated him of much of his Mom-time and his childhood. Don’t get me wrong, he’s still been able to be a kid but there are days when he’s got to be a strong boy and help me through. I know I’d seriously be lost without his helping hands and his kind heart. I used to wonder why this boy came first into my life and now I understand that God’s plan all along was to give me a strong little man to help me through our tough times. And he surely has, every day. He’s sweet hugs get me through it all.

The days when the girls awake, weak and in need of a medicine dose or already ready to go back to sleep (because sleep is a HUGE factor in keeping this disorder managed) are some of our hardest. I never know when I climb out of bed that day if it’s going to be a “normal” morning with no health issues, or a day of loving, holding and praying for the seizures to stay at bay. Many people wonder why I chose to homeschool and a huge factor was days like this. Days that the public school would not understand or be willing to put up with. Days when we just can’t get up and go catch a bus because holding a sister is so much more important or even hugging a little boy to make up for his burdened, yet helpful, kind and strong heart.

Truth is, no matter how normal my girls look, they aren’t. Some people see me as over-protective and fail to realize that I have to be. I have to know where these girls are at every second of the day. I have to know either myself or my son is nearby to make sure they have not slipped into an unexpected seizure unnoticed and alone. Being over-protective and aware is the only defense I have against this disorder. And I am more than aware of my girls signs of oncoming seizures (which are not always dependable, nor do they always show before one comes on).

I am so THANKFUL that my Emmalee, my oldest daughter, no longer requires medication to fight her disorder but that doesn’t mean our fight has ended. The signs are still there, on days when we’ve been out late or have done way too much with no break in activity and on days when she’s not eaten enough or rested. The signs of oncoming seizures show themselves on these days and the ones following until she is settled back into her normal way of life and her normal sleep and rest patterns. She has days where she stares off and is just not there. There are days when her head aches so much from her brain fighting this disorder that she can barely take it (I have them too). It’s a lot for a sweet 7 year old to handle but she does it every day. She is such a bright little girl and so amazingly strong for her age.

Right now the hardest part is watching my littlest angel suffer through this disorder. She has no knowledge of what’s happening to her or why. She takes her medicine cocktails like a pro at only 2 years old. She “knows” without them she feels strange and unsteady and she “knows” this leads to bigger things. Her last visit to her neuro she blocked her ears because she didn’t want them looking inside them. She remembered the doctor was one of the ones who did that at her hospital stay in August. She’s such a smart baby to have to go through so much. She knows she needs her nap once a day to keep herself feeling well. She only argues when the medicine she takes hypes her up and makes her feel strange. On those days, all she wants is her Momma to hold her morning to night.

I’ve been asked in the past why I don’t get a job out of my house and put my children in the public school like so many other parents. Well, days like today are the reason why. I could never live with myself if I put my children into a school or daycare and something happened while they were there, especially when I know they have this disorder. I know it’s more important for them to have time with Mommy, for them to be in their own home so that when they need me I’m close by and when they need a break they have their familiar things surrounding them and their beds to go climb into until the unexpected has returned to normal again. For me, this is much more important than all the money I could have made.

Right now my sweet girl is napping, after her very stumbly morning. When she awakes, she should be as close to normal as it gets for us. She’s had her medicine for her Epilepsy, she’s had breakfast and then her nap medicine to help her sleep. And I’m waiting, for her to wake up, for this disorder to let go of our every day lives (though I know it’s not likely to happen) and for a non-stumbling morning tomorrow. I’m thankful that God blessed us with this disorder because I know it’s something we can handle and it could have been so much worse but I’ll never stop praying for it to just disappear and for my family to be able to have a life that it doesn’t control. For now though, we will continue to be thankful for days like this.