Epilepsy Awareness
Mixed Emotion {Epilepsy Awareness}
This is a rough period in our life. Rough doesn’t even really begin to describe it. Hell is a better term.
I can’t even say what I’m feeling now. I am up and down, depressed one day and raring to go the next. My emotions are completely mixed and in true Gemini fashion, I cannot even guess which of my dual personalities is coming out next.
I’m tired, I’m hurt, I’m angry. I’m a whirlwind just blowing through every day right now. I feel like I’m caught in a spin and I cannot stop it.
I know it will end. I know it will calm. I know I will have that false sense of safety again.
Then BOOM – it will all come tumbling down because seizures will breakthrough, medicines will need adjusted and babies will grow.
I want a normal life with normal kids that have no health issues. Isn’t that every woman’s dream? Don’t we all think how perfect our children will be before they come?
I know when I was a little girl, I never thought that my children could be sick with anything like Epilepsy, even when I knew I had it myself. Now I watch Laycie treat her dolls for this disorder and all because she and her sister and brother have it. She shouldn’t even know it exists!
But she does and what can I do but prepare her for a life of living with it. And not only for her life but for those of her children too. Epilepsy will impact her entire life: past, present and future.
People always tells me about these poor children they know, about their families in town and how they suffer this or that. Though I do feel sorry for them, I think what about my children? People look at them and think how lucky we are to have “normal” kids. They never guess anything is wrong with our children.
Epilepsy is a hidden disorder. Until my children drop, they appear perfectly fine. On the outside, they look like everyone else. On the inside, this monster lurks waiting to turn our lives upside down.
I know I should have more faith. My big brother’s words always stick with me, bringing me strength. On the day I told him Emmalee had Epilepsy he told me, “She’ll be ok. We’ll get through this. We did it with you, we will with her too”.
I hope every day for those words to be truth. To just be able to get through it all, without losing one of my babies, without a seizure damaging their brains for life. Most people don’t realize just how serious a life with Epilepsy really is. Truth is, my babies may not make it through their next seizure and that is my biggest fear in our fight with this disorder.
It’s not something I want to talk about and it’s something I have spent much of our life ignoring. But how can I continue to ignore the truth? Today, I’m not talking about it but you can bet, I will be in the future. Stay tuned.
Homeschooling with God’s Blessing {Epilepsy Awareness}
Nine years ago around this time, it was time to enroll my sweet baby boy, my oldest into public school. I totally wasn’t feeling it. It just seemed wrong to me to send my sweet and curious boy away to someone else all day. So this lead me to research.
I immediately got online and began researching our schooling options. I had come across Homeschooling somewhere on a parenting board. It intrigued me and I wanted to know more.
We {my now ex-husband and I} had just went through a long ordeal of beginning our journey into Epilepsy with Emmalee. She was still just a baby, around a year old and had been doing great on her medicine though she would have the occasional breakthrough as the dose grew weak during her growth spurts. School would be coming up for her before long too, as time has a way of flying. I knew I did not want her to go through the same things I had as a child in public school with Epilepsy. I researched homeschooling even more.
I prayed. I remember I actually got down on hands and knees for this one. I continuously prayed. I’d look at my children and say a prayer, “God just show me what to do”. I’d be in a store and think, “what should I do about school for them?”
It didn’t take long for the answer to come. One day, I was shopping in a thrift store and came across some How to Homeschool books. I grabbed them up. A few days later I was dropping off some unwanted items into the local swap building and discovered a stack of homeschooling curriculum someone had dropped off. Since it was free swap, I grabbed it up too.
I came across our homeschooling association. I put off calling. After finding the items mentioned above, I decided to give them a call. They were absolutely wonderful! So caring and so helpful.
I went to the local library the association had suggested. I spoke in person to the lady in charge of curriculum materials for homeschoolers. She was a blessing to me! God was providing just the people I needed. She showed me so much that day and taught me lessons I still give to others today.
I attended the New to Homeschooling class from our local association. It was an “Ahhh” moment. I left there still nervous and scared but so much more prepared for this journey than I ever realized I could be. God had more than answered my prayer over that few months. Homeschooling was exactly what we were going to do.
We started homeschooling Winston immediately. Emmalee would join in later. I was prepared for only one kid. I had invested in a Bob Jones curriculum from the local Homeschool Used Book Store. I was determined this was going to be done right and that meant Public School at home. No one would say I’m not teaching my kid!
Boy, how little I knew then! It immediately failed. We struggled. Win hated school. And those lessons have stuck with him for life.
Win is my hardest student. He excels at Math. He loves going outside to learn science and is hands-on about history. He hates and is not good at reading. We have used almost every program imaginable and still he struggles.
Emma excels at reading and trust me, I often question how. We have used so many varied programs that she really should be struggling with it herself. With all the time I have spent focused on her brother’s reading, she has really taught herself what she wants to know about the subject. Sure the curriculum was there and it helped but the learning was all her.
{I am honestly proud, not only of her but she has shown me that I’m not a failure as a teacher after all.}
Over the years, we’ve kept plugging along with homeschooling. There was a brief period in the midst that I enrolled the oldest two in Public School at the insistence of others. I immediately regretted that decision when Emma began having migraines and seizure activity after being seizure free for a year.
And it was in that period of time that Win’s esteem suffered because the school made him realize what he never had: he couldn’t read at age 8. Many boys don’t read at that age but they never explained that to him. I’ve spent many a day trying to rebuild that destroyed esteem and let him know it’s ok that he struggles with something and it’s not the end of the world. He will get it and he is getting closer to where he should be each and every day.
I pulled the kids back out of public school. Emma’s health recovered almost immediately when we returned to our normal routine and she was able to rest and not stress. Win and I are still working on the issues he gained while at public school but we are getting there.
Now here we are, 9 years later. Over time, I have questioned our reasons for homeschooling. I wonder if it was the right decision but then there is always something that confirms it was God’s will to me.
Just today, I thought about it. I realized there is no way I could even begin to raise and care for four kids with three that have Epilepsy if I wasn’t homeschooling. The schools in our area are not equipped for them. Then there would be the issue of keeping up with their public school lessons, missing days, taking time off for rest and doctors, etc. The truancy officer would surely be knocking on my door every week!
God knew just what His plans were for me as a Momma of children with Epilepsy. He planned ahead, allowing me to Homeschool. He blessed me with great children who love and listen and help each other along with Momma when she needs it. He prepared us with a way to bond unlike any other and a way to learn that brings us even closer together.
As you consider your own journey into homeschooling, with or without medical reason, remember to pray. Remember to ask God for direction. Sometimes He will point you to Public School because He needs disciples to light candles in the darkness there too. Sometimes He will lead you into Homeschooling because He knows it is what’s best for you, as has been our case. Either way, the results will always be to Glorify God in the lessons and in Life.
Blessed Again {Epilepsy Awareness}
I am blessed. Utterly and irrevocably blessed. I have four beautiful children who are the light of my life. I could NOT imagine anything better.
These kids bring joy to my day. They fill my heart. They smile and my soul melts. Each one brings something special into my life.
God knows, people. God knows exactly what He is doing. God knows every second of His plans. We are here to glorify Him and my children are His blessing to me.
I’ve been down a lot lately. It’s hard having 3 kids with Epilepsy, 2 that have ADHD, one that’s a definite Pre-teen. I could go on. It’s hard to be a Momma at all but when you had health issues, it’s even more stressful. Somedays it is hard to see the happy happy, joy joy of it all. But I am trying.
And today, in this moment, I see God’s blessing and His plan in it all. I don’t know how our lives will turn out but I have faith that we are being led into the path God wants us to be. That my children are being molded into what He wishes them to be.
God blessed me with three children with Epilepsy because He knew I am the Momma for this job. He entrusted me with His children’s care. I do not fail him. I may be weak but I am weak and loved in every single moment. So are my children. Loved by God and blessed by His grace.
When you feel down, know it’s not the end of the world. God has a plan even when we don’t and He will lead the way if we only let him.
Lucky While Living Cursed {Epilepsy Awareness}
Today someone mentioned that families with history of Epilepsy are lucky. That’s a big word: Lucky. It means to be fortunate.
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luck·y
/ˈləkē/AdjectiveHaving, bringing, or resulting from good luck: “a lucky escape”. Synonymsfortunate – happy – successful – providential
People assume that because a family, like mine, has 5 generations that have Epilepsy and that because I have three children who have Epilepsy, that I am fortunate because I have prior case history to go on and I know where our Epilepsy is coming from.
Let me tell you, that could NOT be further from the truth.
It is true that we do have a strong family history with Epilepsy. We were lucky to know what this disorder was when my Emmalee began showing signs of seizure. I was not a satisfied Momma when she was initially diagnosed as having Febrile Seizures and I did not rest until we had the correct diagnoses.
I was lucky to know that I had had this disorder, to know of the signs, the stigmas and the common misdiagnoses of this disorder to be something less. I was lucky to have a Mother who had suffered through night after night of wondering if I was ever going to wake up in the morning, if I was ever going to be a “normal kid” or if I was going to wake and go into a seizure without her knowledge. I agree, I was very lucky to have those things.
Her knowledge of this disorder helped get me through, but honestly, we are no farther in knowledge with this disorder than we were 34 years ago when I began having seizures myself. We are no farther along in knowledge than my Great-grandfathers family or my Grandfather’s mother was when he went through this as a child. We are no farther along in knowledge than we were when my Grandfather was on three separate medications in an attempt to control this Monster that even now they do not understand.
I am NOT a lucky Momma to have this family history. Having more than one child with Epilepsy does not help me to understand this any better than it did the day I had one child with Epilepsy. What I’ve learned past how to deal and the strength I’ve gleaned from my Mother in dealing with it, I have taught myself.
I listen to my children’s neurologist. I grasp any tidbit of information they have to offer. I can sense when they are full of crap and my motherly instincts are rarely wrong. I force them to listen even if it takes multiple visits or me taking my child’s care into my own hands to make that happen. I do what I must to get my babies the best care possible.
Fact: There is NO CURE for my children. I’ve known this for a long, long while. It was confirmed by our neurologist last week, not without care but in an effort to tell me the truth. It wasn’t a truth I didn’t already know.
Genetic disorders pass through from generation to generation on a gene. Generally, they skip generations, passing down the line but not activated. Patterns like Uncle: niece, Grandparent: Grandson and so on are the common inheritance. It’s very rare to pass from generation to generation directly without there being a gene that causes it. And it’s extremely rare to pass through for 5 straight known generations (we do not truly know how many generations before my Great-grandfather have had this disorder as there is no record).
Because this disorder is passed on a gene in my family, there is NO CURE for us. We cannot edit genetic inheritance. We cannot choose DNA. It’s a flip of a coin as to which child will pass this on and how many of their children will have it. I know at least one of my grandchildren will inherit this. I know most likely at least one of each of my three children’s children will have it. That’s 3 grandchildren, at least, possibly more that will go through this and there isn’t a cure for them.
It can be controlled. A cure could be found for my children dealing with it in their lifetime. I’m not saying that. What I am saying is that it won’t stop with us. It will travel on and curse the next generation with it’s terror.
I may be fortunate to have known what this disorder was for each of my children to start, but as I’ve already stated, I know because I’ve taught myself. The records of my relatives before me are not accessible and even if they were, I doubt they would provide much information. This disorder was hidden from the world. It was not and is still not understood by even the doctors trained to provide care for it. There is no wealth of wisdom to glean from the past history that we have.
Each and every one of my children’s cases are different. Each and every one has been treated like a first time case with no common connection. I am currently pushing for answers, for comparisons, for more information on this disorder and how it relates to us. My goal is not for a cure, but for understanding of how this disorder works and how it affects my family. I plan to pass this on for my children’s future and their children. I plan to arm them with the knowledge to live through their lives with this and be empowered along their path.
This is their life with Epilepsy and the only luck they have is a Momma who will provide them with all she can in preparation for their future in living with this.
Five Minute Friday Part 1 {5 Minute Fridays} {Epilepsy Awareness}
So I was reading about 5 Minute Fridays on another blog and thought, what a cool thing to do! And here I am. Today’s subject: Story. Starting my 5 minute alarm now. Here goes:
You can find our story all through this blog. Our life with Epilepsy. Our years homeschooling. Our family and our love for each other.
All of these things add up to tell our personal story. It’s been a long journey since I began blogging. It’s been a tiresome year this year for us. Adding to the story more and more every day. This thing called Epilepsy, it doesn’t hide and it doesn’t seem willing to give us a break anytime soon.
Story: the kids favorite things are books. They enjoy reading and I’m thankful. It shows me this homeschooling thing has paid off for us. So many doubted my choices in the beginning. They did not understand why I chose to be different. They questioned my beliefs. But I feel we have proven others wrong. Homeschooling is like everything else. It’s not perfect but it does work.
It shows every time my children pick something up and read it. My son struggles with his reading abilities but he is coming to learn that he can read more than even he realizes. And my Emma, well she is great at reading. She’s avid and loves to read things that truly teach her, like science stories.
Laycie is quickly following in her footsteps. Every day she has a new series of books that she wants someone to read to her. It’s amazing to see just how many words she’s come to recognize.
This year she begins truly homeschooling, but even that won’t be rushed. I will allow her to grow and learn in her schooling. I will allow her to take the time she needs to learn what is most important to her.
— So the bell has rung and my time is up. Not too bad for my first Five Minute Friday!