living with epilepsy

My Boat is Not Your Boat and Other Thoughts On Epilepsy {Epilepsy Awareness}

January 4, 2014 by Dana

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. We 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. Dadwas 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!

Seizure Update and a Thank You! {Epilepsy Awareness}

December 18, 2013 by Dana

Jackson had another seizure last night. It honestly terrified me. I was afraid it wasn’t going to stop. He hasn’t had a seizure that bed in months.

The circumstances were the same. He got upset and boom, the seizure took over after he hyperventilated. Then he was just out.

This one lasted over 5 minutes and took 5mgs of Diastat to stop. I used up his 2.5 shots because I wanted to see just how much it would take to get it under control. It took both of them, equaling 5 mgs. I did the first one and it did nothing – the seizure was still going full on. I administered the second dose and the seizure stopped within a few seconds.

I have to admit – I was so afraid he’d slip away from me right then. I was terrified he would not stop shaking. His whole body was out of control, shaking from his head to his sweet baby toes.

It hit me that this may be our daily life. We may never have full control for him. Ever. And that seriously scares the Hell out of me.

As a Mom, I’m worn out with this. I’m struggling to keep up and just enjoy my days without letting Epilepsy control our lives. I’m thankful that I have my Mother to help me because I seriously don’t know what I would do without her or my older kids for that matter. They are also a huge help through this.

I asked online for help obtaining a monitor for the kids room. I need one to even hear the EmFit on Laycie’s bed and it would be wonderful to be able to see her while she sleeps and her brother as well. It’s hard to even leave their side knowing what may happen – that it may be the last time I ever see them alive again. A video monitor will allow us that peace of mind.

My dear friend Jo Pair Reaves shared my plight. She is an Epilepsy Momma of two handsome young men. She understands very well just what our family goes through every day because she lives it. Thanks to Jo, we have had a few anonymous donors step up to help us obtain monitors for the kids. I cannot express how very thankful I am! I have thought about this for so long and now it’s happening. I feel so absolutely blessed!

So if you are reading this, please know how thankful I am for the kind gift you have given to us. After our terrible night, this has been such a blessing for us today. I’m so thankful – more than any words could ever express.

Another Day In the Life With Epilepsy {Epilepsy Awareness}

December 11, 2013 by Dana

I’ve been on hiatus. Or would you call it a vacation? It hasn’t been much of one in life, but online it has for certain.

I just haven’t had the time to put effort into blogging like I need to because the house and the kids have needed me so much more. It’s one of those seasons in life – one where I try to keep up while feeling like I’m just barely making it and trudging along. It will get better but for now, I’m just a head above drowning in it all.

This week has been a medication adjustment week for Jackson. Last week he broke through with a seizure. Just when you think you can breath again, you stop and you realize this may never end.

It will never get easier walking in to see my baby breathless – lifeless – wondering if he’s going to come out of this one – running to grab the Diastat just to make the seizures stop. It’s something only a seizure parent can understand. It’s become a fear for me, wondering when a seizure will hit us next and how many more will follow. Wondering if the next one will take my son from me.

I can honestly say, I didn’t fear this disorder until now. I didn’t fear it with Emma. I was beginning to with Laycie. But with Jackson, fear has set me on edge. Just how easily they could be gone has become reality.

I watch daily as friends battle this same disorder with these same fears I have. I watch daily as friends share how other seizure mother’s have lost their babies – both young and older children. And I see the same fear I carry in their posts, their statements, their shares. Nothing can prepare us for this.

It’s life – and we live it daily because we have to. We watch others who take the simple things for granted: like playing on a slide or crying it out to sleep. Our children can’t do these things without us holding our breath and waiting to hold them just in case a seizure happens.

I didn’t come here to talk about Epilepsy tonight but somehow it consumes our life. It IS our life. There’s no way around it, no changing it, no ignoring it and no moving forward from it. It’s here every day affecting how we live.

And so we wait to see what tomorrow is going to bring.

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.

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.