Rolling along

>> Monday, December 15, 2014

I can not begin to put into words how much I hate epilepsy. I hate the roller coaster of having a good week and then a spectacularly bad week. Of having plans that have to stay fluid because you never know if you have to cancel. Wondering what you missed that made it worse, what you did to make it better. Explaining to other children who want to play with your children what seizures are and how they may be scary but HE isn't scary. He is just a little boy. A little boy turning into a little man and while that sucks for most people anyway, it's especially horrific for people with epilepsy.

I hate the look he gives me when he is having a complex partial seizure. The look that says: make it stop. And I hate having to wait to help him to see how bad it's going to get first. I hate having a threshold that changes based on seizure activity.

Tonight is one of those changes.

The last few nights, he again, has been seizing every hour or so. Normally, we do not go for the Diastat, I just sleep next to him and wait it out. That usually lasts a week. A week of 5+ seizures a night that awaken him from slumber. A week of watching the seizures get uglier and uglier every hour. A week of watching him everytime he goes to sleep. Naps are especially bad. Why? Not just because he seizes but because the ONLY relief he gets is torn from him. When one is not sleeping well and one naps, if that nap is interrupted the cycle gets worse and the mood gets worse and bad things begin to happen.

So tonight...he has already had 3 seizures. One more and he is getting Diastat. No, I am not a health care professional but I am planning on giving my son Diastat for the second time in two weeks. I am giving it to him to stop bad things from happening and I will NOT question the decision to do so. I know him. And that's why I will help him. There is not an option here, there is only relief and the universe will hold it against me if I don't help when I can. So, I stay awake a little longer, waiting for the inevitable and trying to make things better for others.

I love you little man. I WILL make it better.

1 comments:

Dani December 16, 2014 at 6:37 AM  

love you, you know what you are doing, we are all behind you xoxoxoox

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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