Children with Epilepsy

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.

My Heart, My Soul is Angry {Epilepsy Awareness}

May 1, 2014 by Dana

My heart aches. It’s been a long time since I have blogged anything about our Epilepsy. I have closed it off and tried to ignore it’s existence but this week the Monster has made sure I know he’s there. It’s been a long week and it’s not over yet.

Three seizures in three days for Jackson. Two mild and one very big one that I honestly questioned whether or not it was going to stop. I want to break. I want to cry. I can’t because Jackson needs his Momma strong. Winston, Emmalee and Laycie need their Momma strong.

These seizures are becoming the norm in our family. They were already an integral part but now they are a prominent, daily feature in our life. I hate it. I hate they exist. I hate they happen every day. I want to scream at this monster to just go the hell away, to leave my baby boy alone. I want to scream at God to make them stop.

Sometimes I whisper it — I know He hears my soul pleading.

I beg Him to stop the seizures. I beg Him to heal my babies. I beg Him to just listen, just take it away and make it all stop, to give my sweet baby boy the normal, seizure free life that he deserves. To give my girls the same. He hears me but still we fight this battle to which we have no control over.

I may never know why. I am not meant to understand His logic, His reasoning behind the Monster’s attacks on my family. Sometimes I feel like it’s just a game but I know there must be some purpose, some greater reason that I just cannot see.

My heart, my soul is angry. He knows it and yet He still loves me. That’s the way it is. I try not to be angry and not to take my anger out on Him. Yet, I know God is there – waiting. He’s waiting for me to break, to come to Him so He can heal the hurt and pain that only He can.

He’s waiting for me to share this story, for others who suffer like me. To share it for other’s who watch their babies suffer with this damned disorder daily, just like mine do. I know this is my purpose, yet sometimes I fight it. I don’t wish to be a seizure Momma, yet here I am.

And then the words flow, much as they are tonight. I feel led by God to share, to spill my heart and bare these wounds that haunt me. When I rise, I stand strong again, in Faith, Love and in Grace that is given only by Him.

I am undeserving but oh so thankful for His Grace, for His Love and for every single minute that I am blessed to love my babies on this Earth and beyond. I cannot imagine this world without them, though I know they are only gifted to me for a specific amount of time. I pray it never be cut short, that I am able to outlive them and they live long, seizure free lives. I know that may not happen but I pray it does, like most Momma’s do.

I just want the Monster to stop – to go away and let my babies live happy, long lives full of Love and Faith, to be able to fulfill their dreams and wishes without convulsions and pain. Maybe one day. Until then, I will patiently wait and continue to pray and have Faith. It’s all any Momma can do for her babes.

It’s the Simple Things {Epilepsy Awareness}

November 11, 2013 by Dana

It’s the little things you take for granted daily when you have a child that has no disorder. The every day things for a normal child can be a sign of something more for a child who has a disorder. The simplest things that the every day parent takes for granted mean the world to a Momma like me.

As an Epilepsy Momma, I can’t allow my children to go beyond my reach for long without worrying about a seizure in one of my children. I cannot allow my children to become upset and discipline isn’t an option either as spanking or even the simplest time out can lead to a seizure. Playing outside becomes a concern because heat and even cold can exhaust a child, make them sick and both of those things may lead to a seizure.

As an Epilepsy Momma, I’ve come to appreciate the nights when we are up late as time to love and snuggle but I also know how extremely important it is for my babies to sleep as much as possible on a schedule to keep this monster in control. I’ve learned to enjoy play but keep it calm and relaxing, or change the pace as needed in a day. I’ve learned to limit activities to things that don’t contain flashing lights, or long periods of extreme action as these often lead to seizures for my children.

As an Epilepsy Momma, I’m unable to leave my child with just anyone. I cannot allow the neighbor to take my children for an hour or two. I must make sure my family and friends know my child’s disorder, know what action to take if a seizure happens, know how to administer emergency medications just in case. Honestly, it’s simply easier not to even leave my child because of all of these things.

Because of this, I am often called overprotective and overbearing of my children by the “normal” Mom’s. Those who have special needs children know that I’m not overprotective, I’m simply a Mom of a child with a disorder.

And this is the life we live. These simple things, things that are daily taken for granted are things that affect our daily lives. I am an Epilepsy Momma.

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.

Dreams and Prayers {Epilepsy Awareness}

September 20, 2013 by Dana

Like most Momma’s, I have big dreams every time one of my babies are born. It was no different with Jackson.

Like most Momma’s, my thoughts were not on him being sick – that was a mild thought in the back of my mind – what if he has Epilepsy too, like my girls, but I never thought it would actually happen. Then it did.

Right now, Jackson’s only a baby but I can see him grown, reaching at least 6’4 with blue green eyes, like mine, and a wide smile. I can see his huge feet, and his hands large enough for hard work, but gentle in love. I can see him loving the outdoors – he already does – and working hard.. I can see him learning to shoot his bow, his gun and also see him nailing a deer on his first “real” hunt.

I can see all of these things clear as day, but I know they are not promised by God. The reality is that he may never reach the age for me to see these things. Epilepsy is a thief that sneaks in and attacks without notice and takes those we love in the blink of an eye. Jackson’s lack of control puts him at higher risk for this, doubles his risk for SUDEP – Sudden Unexpected Death in Epilepsy.

Right now, we are evening out on treatment. The Phenobarbital is his 6th drug in two months but his 3rd specifically to control the Epilepsy. So far it’s working. He’s been on this medicine a week and a half and he has had two seizures that lasted less than a minute each, with no after effects. He’s had a few mild absence, too but they lasted less than 30 seconds each. This is a huge change from weekly – sometimes more often – Tonic Clonics (Gran Mals) we were seeing in him. He can even tantrum and he comes out without seizing first.

I’m thankful for these changes. I’m thankful we have control. I’m thankful for answered prayers. But I am not naive enough to believe that we will never face these things again. Medicines become outgrown, treatments begin to fail. At this point, I can only pray this doesn’t happen, pray that treatment continues to work and continue to enjoy the days that God has blessed me with, with my children.

I will never forget the fear I felt in seeing my baby without breath, struggling for life. Neither will his brother and sisters. But we have a faith in God that He will bless our Jackson and our Laycie, that He will allow them to share our life, our days for a while longer and that I will someday see my boy grown and see all of my sweet babies living their life seizure free. Prayer does miraculous things!

Dreading Days with the Epilepsy Monster {Epilepsy Awareness}

August 23, 2013 by Dana

There are days when I just don’t want to write. Days when I’d rather shut everything out and surround myself with my children. Days when I don’t want to admit the monster is lurking, watching us, waiting to attack when I least expect it. I’ve had several of those days recently.

It’s hard to ignore though, when you are laying in bed with your significant other, with two littles in between you. It’s hard to ignore when those littles begin twitching through the night or smacking their lips in a rhythmic pattern that isn’t normal. It’s hard to ignore when those littles are restless, bodies taken over by that unseen monster that you’ve been praying hard would just go the Hell away.

We’ve been through a lot lately – yes, that’s very much an understatement. We’ve been through Hell lately, every last one of us. I question when it’s going to stop and what the purpose is in it all.

Right now, today, at this very point our lives have slowed down. There has been no seizure in a week. The medicines seem to be controlling though Laycie’s still isn’t quite perfect, it’s getting there. But my fear is the false sense of security, the calm before the storm before it all breaks lose again.

Last week at this time, we were battling with the Epilepsy Monster. My poor sweet Jax was falling hard to this beast. Thursday he had a Tonic Clonic and an ER visit. Friday he had back to back Tonic Clonics and another ER visit, followed by a weekend stay at the Children’s Hospital. We repeated his EEG and found NOTHING. We did bloodwork and found NOTHING. We raised his medicine dose and then I gave up and asked to come home. There was nothing to be found and no reason to prolong our stay there when we could go home, be comfortable and wait it out in our home.

Last week was Hell and will stick with me just as the day Laycie had 9 gran mals and was Status Epilepticus for 13 hours has. I will never forget my Mother calling me immediately after closing the car door to head to the store for diapers last Friday. I will never forget how my shoes stuck in the water soaked puddles as I attempted to run in the house. I will never forget how my baby, my sweet boy laid so still and lifeless in my Momma’s arms when I opened her door. How she raised him up in her hands and he was just gone, so quickly gone and there was absolutely nothing I could do but pray and wait.

People tend to look at children, at people with Epilepsy and think there is nothing wrong. A perfect child with a hidden secret that can’t be seen is thought of as being normal. Our life is far from normal and days like the ones we had last week are days that I hate. The days when their is nothing that I can do but pray for my children, pray for my olders to be patient and know I love them. Thank God that my Emma, my oldest daughter has seemingly outgrown this beast. Pray that her sister and her brother soon follow her in that, though I know it will be a long road to get there, if we even do.

I have hope. I have faith. I have all the things needed to get through this but it’s not easy. I don’t like to even acknowledge it or talk about it but I know I have to. I feel called to. And perhaps that is God’s point in gifting me with 3 out of 4 gorgeous, sweet children who suffer with this disorder. Perhaps he simply wants me to share, to speak out, to acknowledge this beast and it’s impact on our life so that others can better understand it and yet others won’t feel so alone.

I long for a normal life with normal kids who have normal illnesses like colds and such. I have a normal life with children that have been blessed with Epilepsy. This is our normal. These are our days. This is our life, impacted to the fullest upon every day. Without God, I could not manage, could not make it through, could not even begin to deal with any of this. I am thankful always for his presence.