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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.
My blog is my journal. I come here to write. I come here to put my thoughts into print.
It’s always been easier for me to write out how I feel, than to say how I feel. I wear my heart on my sleeve. Because of that, it is hard for me to be honest to others, though I am always an honest person.
I tend to take things to heart. Words wound me because they are so important to me. Feelings take control of me.
These things play a huge part in my blogging and my sharing about Epilepsy and my children. I write to journal our life but also to share life how it is, living with Epilepsy. It’s not easy but I do my best.
Life with Epilepsy is a long, winding journey. It surrounds us daily. It is our life. We know no other way than to live in the midst of this disorder.
Like with so many other disorders and diseases, if you live in the midst of the trial, you understand. If you don’t, you can only hope to comprehend what I am referring to. It’s one of those either you know or you don’t things and not everyone does.
I look at my children and I feel blessed, never saddened by this disorder. It scares me but I am thankful for each day I have among them. Their lives are not shortened because of this, as none of us have dates stamped upon us for our time to go. I could very well leave the Earth well before they do.
This isn’t a life I asked for but I live it. Someone commented to me the other day that since I have chosen not to have more children, I won’t have to worry about another child of mine having Epilepsy. This is true but I’d have given birth to 100 children regardless of that chance if I could have. The risk was well-worth the gift that my children’s lives are to me. I will teach them that the risk is worth it for their children too.
We have carried this for generations now. It will most likely carry for generations to come. I wear it with pride, though I wish everyday I didn’t have to. Having Epilepsy is nothing to be ashamed of. Having Epilepsy is nothing to be afraid of for God is with us every day. Having Epilepsy is just another part of our lives and I will continue to feel blessed by it, not torn apart by something I cannot control. Even when I am weak, I am strong.
As I was sitting here, trying to think of a topic to write on today, I read this on the Epilepsy Foundation of Arizona’s Facebook status: Fact of the Day: Epilepsy is never contagious.
And it’s not. You can’t catch Epilepsy. It just happens. Sometimes it’s triggered by some major accident. Sometimes just from a simple change in the body. Some people inherit it, as my daughters and I have.
Epilepsy is NOT a disease, it is a disorder. It is a unbalanced electrical reaction of the brain. I describe it as computer overload. When a computer is overloaded, it will crash and shut down. This is the same reaction the brain gives when a seizure happens. The brain processes and overloads, then the body shuts down or rather seizes.
For my girls, this happens when they are learning a LOT of new things. It can also happen when we’ve had an exhaustive weekend like this past weekend was for us. The girls will become overly-tired and I begin to notice their body fighting to stay on track. They will have mild jerks or twitches while awake. They will act “spacey”. They are excessively whiny and nothing can make them happy. At their worst, they will fall into a convulsive seizure.
We have dealt with this disorder actively for 7 years now. I know the signs and when I see them, I have the girls take a “rest” day. We lay around, rock, love on each other, watch tv, read and do simple activities. We also nap and go to bed early to allow our bodies plenty of rest. Doing these things usually keep our seizure activity low and gets the girls back to normal within a day or two. Homeschooling makes this easy for us to take “rest” days as needed.
Epilepsy never completely goes away. It’s always there, even when it’s outgrown. It could reoccur at any time but it is NOT contagious. It doesn’t rub off on you when you bump into my child. It doesn’t contaminate your skin when my child is seizing and you touch their drool or vomit, as the case may be. And it is not caused by Demons as some people believe (yes there are those who actually do believe that).
Epilepsy is a disorder that can be controled with routine, structure and most of the time with medicine. Sometimes surgery or a special diet helps to control it (we will discuss more about those later).
Dealing with this disorder is an everyday part of our life. Each day we wake up is a blessing and each day we wake up without any signs of seizure is an even bigger blessing. Seizures happen unexpectedly, so we must always be prepared for one to suddenly “pop” up. This is our life.