medication

My Momma Heart Is Broken {Epilepsy Awareness}

March 20, 2018 by Dana

My Momma heart is broken.

Just when I thought maybe, just maybe Laycie could stop taking medication, that her seizures were possibly controlled, that she’d been showing no signs of the Monster, that Monster comes and shows his ugly face again. We were settled and content and hopeful. We’d let our guard down.

That’s the thing with the Epilepsy Monster: he comes when you don’t expect it, when you get comfortable, when you let your guard down, when you start to feel safe again. It was my hope that my baby girl would not be on seizure medications forever. Every day, that hope goes a little farther away.

Laycie is almost 10. She’s had seizures since she was 4 months – exactly to the day. They have not been kind to her.

Her first seizure was a tonic clonic. She went through multiple testing in that first 3 days after it happened. Everything normal. She was placed on Keppra and we were sent home.

2 weeks later, at 4 1/2 months old, she went Status Epilepticus. She had a 13 hour, relentless seizure that I thought would never stop. 9 tonic clonics and over 20 petit mals: we lost count at some point during the day. I honestly thought I would not be bringing my little girl home that day.

Since then, her life has been filled with doctors, and blood work, multiple medications, therapy and more. We’ve are thankful for the most part that we’ve been able to establish some control but even that is not 100%. There are no guarantees for anyone who has this disorder.

For the last year, things have been going well. We’ve seen very little activity. We’ve had no partial or full seizures. We had hope that maybe this was over for her.

Yesterday morning that all changed. She came to sleep beside me early in the morning, as is our tradition and a short while later I woke up to a rhythmic thump of the bed. And I knew immediately we were not done with this Monster. He was back again to show me that my hope was useless.

Laycie, thankfully, did not feel the seizure. It was a complex partial centralized in her lower half. Her legs shook and it lasted less than a minute. She slept through the entire event and woke up her normal, sweet self.

She suffered no complications from it. She felt fine all day. She played, ate and did everything normally. I’m thankful since we never know how things will effect her.

This morning, she slept beside me again. No seizures but she was extremely restless. This tells me her body is fighting and she’s not getting the rest she needs. She’s argumentative and challenging today. She has no idea why but I do. This is the other side of Epilepsy.

So now we wait, we hope and pray. But I face the truth: she may never outgrow this. It may never go away for her.

This has been our life for many years. I’m used to it. It’s not new. But the hope is dwindling every year that at some point she won’t have doctors appointments, and scheduled EEG’s each year, or blood work every visit, and there’ll be no more medications to keep this Monster in control.

It was my hope that one day she’d get to live a normal life. One day she’d not have to do these things. One day, she’d be okay and we wouldn’t have to worry so much.

Today though, we still fight the battle.

Until next time…

Migraine Day and Special Needs Effects {Epilepsy Awareness}

January 17, 2011 by Dana

I woke up with a mild migraine this morning and knew I would have to return to the bed. I hate days like this. Migraines are the unfortunate side effect of having had Epilepsy as a child (for me and for my oldest daughter). It’s often hard to tell if a migraine, for me, is caused because of an imbalance (brain) or because of my sinuses, since both both me at times. I believe this one was from an imbalance due to stress.

The last month as been an extremely busy one, filled with ups and downs, going here and there, and barely any time for rest. This weekend was the last busy one for a month and didn’t allow for a lot of rest, though there was a tremendous amount of fun for all involved. I’m thrilled to have been a part of it and I’m just as thrilled for it to be over with.

Dealing with a migraine is never fun. Waking with one this morning, I knew I would spend most of my day in bed and I certainly have. After napping to rid myself of the main effects of this major headache, then checking on my sweet children, I have gotten caught up with my world online. There wasn’t much else to do while waiting for my head to completely ease off.

I find that taking my allergy meds, which I do daily, taking an Aleve, drinking a Pepsi and eating a Hershey’s chocolate bar, my headache will sometimes disappear, especially if I do all of this early in the process. Today it’s certainly worked for me, though I know from previous experience that it can return at any time. A good nights sleep is what’s needed to really keep this mild migraine from returning and turning into a Super-Sized-Sick-All-Around Migraine.

As I think about all my girls will go through with their Epilepsy and it’s atrocious after-effects, I feel sad and a little guilty that I have passed this on to them. It breaks a Momma’s heart to know her children have something like this hidden illness that causes them to not be completely perfect health wise. It breaks my heart to know all of the pain they have endured and will endure because of this disorder throughout their lifetime. One never knows the effects Epilepsy will have on their life. Until you become a parent with a child who has a disorder like this one, it’s hard to understand HOW much it truly does effect a child’s and a parent’s life.

Growing up, I knew the effects of Epilepsy as a person living with it. I, thankfully, don’t remember my convulsive seizures but I do remember the tests, the weirdness I sometimes felt when I had an Epileptic episode that was non-convulsive, and the sadness I felt when a teacher would yell at me because I wasn’t “listening”. (No I wasn’t listening because I was seizing and you didn’t know it.) The impact of this disorder on my own life caused me to relearn everything I could for my children when it became their turn to suffer through this. It also impacted my decision to homeschool my children so that they wouldn’t have to deal with an imperfected educational system set up for millions of children who are considered normal.

I’m thankful that the effects of our busy season, the Holidays and Birthdays, has had mild effects on all my children. I’m thankful that it’s me sitting here with this mild migraine instead of the girls. I’m thankful to know what they go through and know how to handle it, for the knowledge God himself has bestowed upon me.

Recently, I had a friend tell me I home school because I’m afraid to let go of my children, that I do it for myself. Maybe, partially, I do. I know how easy it is for God to take a child home to Him. I want to enjoy every selfish and selfless moment I have been given with these three beautiful children by Him. I am afraid to lose my girls to this disorder, to let them go into an imperfect institution that is not prepared to handle their seizing IF it was to happen. I cannot live with that maybe, that IF. I would never forgive myself if something were to happen that could have been easily prevented at home, under guidance of someone who knew how to handle the effects of their disorder.

It’s easy for anyone to look at my children and say “oh they look normal”, or “there’s nothing wrong with them”. Looks can be so deceiving and yes my children’s respective disorders could be much worse than they are. I’m thankful everyday that they aren’t, that I am able by God’s hands to be able to deal with each of their individual special needs. The life of a Mom with special needs children is exhausting and it never ends. There will be no end for my girls with this disorder, even if it goes into remission. Like Cancer, Epilepsy can always return, unexpectedly at any time. Until the day I die, I will be on my knees praying it goes away and does not return but even this is not a promise it won’t. However, when it comes up, when they have bad days, and good ones, I’ll be there beside them battling away the demons and receiving the love and hugs and happy smiles that come.

For those wondering, my son does not have Epilepsy but he does have ADHD, as does my step-son, which is a disorder very similar to Epilepsy but instead of resulting in seizures that shut their bodies down, as Epilepsy does, ADHD results in hyperactivity and impulsiveness that is caused by over activity in the imbalances of the brain. My son is not medicated for his disorder but my step-son is. My son does not attend Public School because of his disorder and also his sisters disorders, while my step-son does attend, by his families choice.

Both these disorders, Epilepsy and ADHD, treatments are very similar and can sometimes (not always) be controlled without medication by adjusting your child’s schedule, sleep patterns, and home environment as my son and oldest daughters are controlled. My youngest requires all of the above and also medication to control her seizures at this time but as time goes on I hope to be able to remove the medication and control her episodes through the same balance and structure provided for her older siblings. Only time can tell what will happen with this.

When my oldest was going through the days and months of her first seizure, my brother told me the wisest piece of advice I know. He said, “We dealt with this with you and made it through and we will deal with it and make it through hers too”. Funny that as time has gone on, due to his own life, we are no longer close, meaning he is no longer dealing with it (or my sister either for that matter, both because of their own choices in life) but his words have always stuck with me and they are definitely true. I have made it this far, they have made it this far and I will keep fighting with and for them for all the things they each need to over-come their each of their special needs.

They have changed my life for the best and I would never have it any other way. I’m thankful for the gifts they are in my life. And if you’ve made it this far, thanks for reading my blah blah blah blog.

Have a blessed day!

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.