seizures suck

You Are Not Alone {Epilepsy Awareness}

January 16, 2018 by Dana

One of the things I love is coming to my blog and seeing which of my posts are popular. Most of them are our Epilepsy posts. When I began blogging, I didn’t intend to write about that aspect of our lives but I wanted others to not feel so alone in this journey that we’ve lived with now for generations.

I’m lucky. I have generations of family who’ve had Epilepsy, who I can relate with. Not everyone has that. Most of the families I’m in contact with daily don’t have anyone they know that has Epilepsy and they often have no knowledge of Epilepsy itself.

Now it’s not lucky that we’ve had to deal with seizures for generations on generations. This is a mean disorder that holds no kindness to it’s victims. But I have history to compare to, especially for myself and my children. I know what I’ve lived with. I know what they’ve lived with and how it affects each of us.

I have 3 children with Epilepsy. I’ve been to every appointment with them on this. I’ve asked questions, had medications changed and adjusted, address dietary issues, made thorough notes about each type of seizure we all have. I’ve taken on this part of parenting willingly because if I didn’t, who was going to? But more than that, God equipped me to do this. He knew when He chose me I could do it, even when I questioned.

I’ve been through the ups and downs of this disorder as a Mother. I’ve explained as much as I can to my children when they ask why this happens to them or why they need medications, or why they need an MRI or an EEG, why we have to stay at the hospital this week. This is our life. This is what we do. Epilepsy isn’t a choice but it is our life.

When you’re feeling down about Epilepsy, remember to look up, to pray, to allow yourself peace and grace as a parent. Don’t beat yourself up. There’s nothing we can do to change the fact we have this disorder, nothing we can do to change it. We accept it and move on to help our children deal with their days better.

It’s been a while since I posted about Epilepsy. It’s something I try to ignore some days but it’s always there. When I least expect it, it will rear it’s ugly head and remind me it’s still here lurking in the sidelines. And then I remember there are others like us who also deal with this. I pray our blog helps you to deal with the day to day and know you are not alone.

Blessings,
Dana

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

The Epilepsy Monster Strikes Again {Epilepsy Awareness}

June 12, 2013 by Dana

Days at Luv’N Lambert Life appear fairly normal. There is no general chaos or drama unless it’s caused by the outside world. We go about our days, living and enjoying life with little issue.

But there is a hidden danger that lurks here every day. It strikes when I least expect it. It completely wipes my child out and hinders my days and weeks.

Epilepsy is our hidden danger. You don’t see it physically in my children on a daily basis but it’s there, lurking, waiting to strike when I let my guard down and think everything is ok.

Yesterday morning it hit us again.

Monday night went as planned: dinner, kids baths, kids to bed, get things laid out for therapy on Tuesday. It’s our routine. We do it every week. No problems.

The kids went to bed. They were staying over at Grandma’s house. Laycie, as always, slept snuggled next to Jackson and Grandma in Grandma’s bed. All was well and everyone slept nicely. I slept at our house, not 100 yards away.

Morning came and my phone buzzed heavily. I honestly thought it was my alarm telling me to get up and get ready for therapy. It wasn’t. The phone said “Mom”. My heart dropped as I answered it. All she said was, “Get over here NOW!” My mind raced to think “which one of my babies is hurt. Oh God, please let everything be ok!”

I knew better. I knew something was wrong. I ran into the house and yelled to my Momma, “where are you, what’s wrong”. I could hear her calling Laycie by name. It was all like a terrible nightmare.

I walked into her room to see my baby, my tiny sweet precious girl laying with her legs straight down, arms pulled stiffly up to her body. Her lips were grey, blue. Foam was pouring out of her mouth. Vomit mixed in.

She was seizing and there was nothing I could do. I remember saying, “is she ok? Is she breathing?” No, at that point she wasn’t. Her heart was beating, her breathing had stopped and she was stuck in the midst of this seizure that we couldn’t stop.

Poor sweet Jackson was laid at the end of the bed just looking around. He had no idea what was going on, as this is his first experience with his sister’s Epilepsy. He looked from me, to sissy to Grandma and wondered why no one picked him up though he was smiling sweetly.

Laycie was our only concern at that moment. I had left my phone at the house, so I grabbed my Mom’s. Thank God it was charged. I dialed 911. A man answered. I left the room, my baby with my Mother and ran to get my Mother-in-law, all while telling this kind man the details of our emergency.

On the way, I told Winston and Emmalee to get up. I remember telling Emma, “your sister is sick, get Jax now”. My sweet strong, Emmalee who went through all of this so many times herself is now on the other side, watching her sister suffer. And my rock Winston who I could not have made it through without.

I remember telling the 911 dispatcher my address while running across the yard to my Mother-in-laws. I remember telling him my number. I remember telling him “my 5 year old is having a seizure, please God hurry” “she isn’t breathing, she’s blue, she’s foaming”. I am quite sure he thought I had probably lost my mind by this point.

I remember standing in front of my Mother-in-laws door thinking “should I knock or just walk in”. I knocked, then I reached for the handle. “Is it locked, oh please don’t let it be locked”. As I reached for the knob I could hear the dogs barking so I knew she’d be getting up to see what was wrong. I called for her.

She was coming down the hall and asked “what’s wrong”. I told her “Laycie is having a seizure. I need you to come now”. I turned around, left and ran back to my baby. She followed.

I ran back into the house and updated the dispatcher on Laycie’s condition. She was still seizing. Her body jerking uncontrollably while my Mom talked to her, trying to console her. She was still pale. We rolled her back onto her side. She was so still but she was breathing again. I remember taking a breath at that point and thinking “thank you God, it’s almost over. Please don’t let her go into a another one.”

The dispatcher was still on the phone. At some point I ran to our drive to see if the first responder was arriving. I remember him telling me the fire truck would come first. At this point they weren’t there.

I ran back inside. Laycie was still but not seizing. I ran back out and the fire truck was pulling in. The dispatcher hung up. I waved the fireman over. I told him she was inside. I led him to her and let him work. I could hear my Mother-in-law saying “the ambulance is here”. I heard her telling me “you need to get dressed so you can ride with her to the hospital”. I ran out, waved the ambulance to the back. I ran to get dressed. I grabbed my purse, my phone, threw on clothes, grabbed Laycie a dress and ran out the door.

By the time, I got back the EMT was carrying her to the ambulance and she was crying uncontrollably. But it wasn’t a cry, it was a scared, rhythmic whine. She wanted her Mommy but I couldn’t hold her.

I jumped onto the ambulance first. Then the EMT lifted her in, along with herself. She laid her on the gurney and buckled her on. She handed her a huge stuffed bear, as big as my Laycie and she snuggled right into it.

I realized about the time we got down to the mailbox and I began to breath again knowing she would be ok for now, that I still had my Mother’s phone. Everything had happened so fast that I had forgotten to hand it back to her.

When we arrived at the ER, Laycie’s eyes were still dilated and she was still doing her rhythmic whining. They lifted her into a bed. It wasn’t long before the ER doctor came in. He asked all the usual questions. I told him I simply had her brought in to be monitored. He asked “what kind of monitoring are you expecting?” My honest emotion to that question was “what the hell?!” I replied, “I want her vitals checked and I want her here in case she seizes again to be sure her seizures are controlled”.

Laycie’s seizure was a Grand Mal. It lasted approximately 4-5 minutes. She was postical for 3 hours. She was completely unresponsive when the first responder arrived. My Mother said he insisted the EMT’s carry her in. Other than us, he saw the most of the results of her seizure.

It took Laycie 30 minutes to become responsive, other than the rhythmic whine she had in the ambulance. Her first response was to shake her head. It was barely visible and she would only tell me yes to simple questions that I asked of her.

It was another 30 minutes before she would speak to me. She couldn’t see me because her eyes were so dilated and out of focus. She couldn’t speak because her seizure had locked that part of her brain at the time. She couldn’t take her medicine because she couldn’t open her mouth. She wasn’t able to control that part of her body.

She didn’t talk until her Daddy came in about an hour after arriving at the hospital. She was so happy to see him. She lit up the room with the expression on her face. He climbed in the bed with her and she snuggled right into him. It was then she started talking.

She was quiet and slow but she was coming back to herself. We were finally able to give her her meds which she took with applesauce, though she wanted her usual yogurt.

She wanted to eat so her nurse brought her juice and crackers and found her a sausage and cheese biscuit. Laycie ate the sausage and picked at the rest. Her tiny body was so tired though she was trying to gain control of it again.

After eating she snuggled up to her bear the EMT’s had given her and took a nap. It only lasted about 15 minutes but when she woke back up she was back to herself again. She wanted to get off the bed. She wanted to go home. She kept trying to pull her wires off and put them back on. She was ready to be Dr. McLaycie, as we often call her at home.

Her least favorite part, even though she tried to prepare herself, was having bloodwork done. She did so well though. She tried not to cry but when the needle went in she lost it. Poor, sweet angel.

It wasn’t long after that we were able to go home. She’d had no seizure activity in the ER. Her vitals were all good and strong. The ER doctor called her med team at MUSC, who advised them to tell us to increase her morning dosage on her meds and to call and schedule her next appointment to be seen. So that is what we are currently doing.

We came home and we’ve been relaxing together ever since. She’s laid in Mommy and Daddy’s bed and watched tv. She’s eaten well and has a strong appetite. The med increase is making her excessively thirsty.

I’ve tried to encourage her to sleep but she’s scared. I asked her why and she told me a Monster tried to take her over. I can only assume she means her seizure. I’ve held her and talked to her until she felt safe enough to sleep.

I’ve personally struggled to go to sleep. I’m terrified of her having another seizure and being alone in it. Or worse, not waking up from it. I worry that I will wake up to find my baby not breathing. It is a living nightmare. A horror movie come to life.

Every twitch she makes, I wake up and check to see if she’s ok. I refuse to disturb her other than checking to see if she’s having a seizure and I won’t leave her side for long. When I do, someone is with her: Grandma, her brother, sister or Daddy.

Right now I’m in watch overdrive. She on the other hand, appears to be back to normal. She feels great, she says. The only set back is her fear of sleep and the thirst from the meds. I wish I could feel as at ease as she does.

She now carries her big white bear with her everywhere. We’ve named him Mr. Snuggles. In one day, they’ve been through a lot together. I imagine they will go through a lot more.

I’m sharing our story so that others have an idea of what a family and a child with Epilepsy goes through. Everyday people see my child and think “there is nothing wrong with her”. I only wish that was so. You can not see her disorder. It attacks when we least expect it, when we let our guard down and begin to think it’s ok. But it’s there. It’s a daily part of our lives and we are always looking, waiting, preparing for it’s attack.

Other Momma’s who do this daily understand. But not everyone gets the picture. My hope is that our story, our blog, our life helps give you a better understanding of what Epilepsy really is. And my prayer is that you never have to experience it first hand. SEIZURES SUCK!

God bless.

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