Seizures

Can we talk about seizures? Words cannot explain the hatred I have for them. Words cannot explain the worry and the anxiety that comes with waiting for them. Words cannot explain the horror of watching your baby, or other loved one, while they are having one.

What do most of you think of when you hear the word seizure? Violent shaking of the body right? That's what I used to think of. Little did I know there are several other types of seizures. Ones that you can barely detect because it's like they are staring off into space for ten seconds. Ones that are just little twitches, ones that make you hallucinate, ones that make you fall face first to the floor and many others. Some I have seen, some I haven't. Most of these I mentioned, I have seen.

What causes epilepsy? The root of the diagnosis could be brain damage, it could be hereditary, it could be this or that. It just depends on what type of seizures and how often they are happening as to what diagnosis you get. Once you start having them though, almost anything can set off another one. Getting to hot, to cold, to stressed, about to get sick, getting over being sick, weather changing, storms, etc.  You name it.

That's just the technical stuff. Let's talk emotional stuff. Even though his seizures aren't as bad now as they used to be, I still have all the fears that come along with them. Right now he is having one every 3-4 weeks unless he is sick then they are pretty frequent like 1-2 a week. SO every time he has a stuffy nose or a cough I'm just bracing myself for what's to come. Or sometimes he has them before the symptoms even show. I feel so helpless for him. I feel like there is something I could be doing or should be doing but in reality there is nothing. I feel less of a mother because he is the one having these and not me. Sometimes when it's at the 3-4 week mark I find myself stressed without even realizing this is why, until after. Then I feel guilty for feeling somewhat relieved that he won't have one for the next couple weeks. Who does that? Feel relieved there child had a seizure?

I have no doubt that some of these feelings are not rational. I have no doubt that my trying to put into words how I feel doesn't do my feelings justice.

They stole from him. Seizures stole my babies memories. They stole my babies brain function. How am I supposed to forgive them for that? They hurt my baby, therefore they hurt me and the rest of our family.

I have done what I have needed to do to take care of my child. Always have always will. I am so happy to do so. He is happy, vibrant, smart, loved, and has off the chart EQ. But oh what I wouldn't give for him to never have another seizure.

He's been on so many meds, still is. He had a VNS implanted, yet they still get through at that every 3-4 week mark. He was on the keto diet for several years when he was having drop seizures. That is the only thing that helped them.

I don't want you guys to get me wrong. I don't just sit around waiting for another one to happen any more than I sit around waiting for money to fall in my lap. We live our lives. We are happy. This is just a part of our story, a part of our lives. Every family, every person has their story and their struggles. It helps me to write my struggles. It helps me to document how I am feeling.

Love to you all!
Amanda

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