Routinely Inconsistent

>> Friday, April 12, 2013

Sometimes, after Bug seizes, and before he comes completely around, I have to touch all of his fingers, and all of his toes. Like a new Mother does with her infant. I have to reassure myself that all things are in order, and that he is OK. I watch him breathe. I stare into his eyes, usually with no recognition on his part and I think: It will always be this way.

He will always seize. He will never say: Mom, I love you. He will struggle to walk straight lines. And he won't know any different.

The tough part: We do.

We know the boy he was. Every so often, when we see glimpses of 3 year old Bug, we get excited. We think he is coming back. Then, the other shoe drops and we lose him all over again. Losing him once was horrific enough but to lose him time after time after time. It's some sort of cruel trick. In fact it is the worst kind: false hope.

Yesterday, we found out that his EEG hasn't changed since December. That is a very good thing because we removed one of his AED's. Bye Bye forever Dilantin! And we lowered the Lamictal. And while he isn't seizing more, he isn't seizing less either.

I hate that our entire lives are epilepsy. I hate that I live, eat and breathe waiting for the next seizure but we have come to accept it. His little sister isn't even 18 months old and she knows when he is seizing. She runs to him and pats him, she says: Buddy Ok? Over and over.

But I love that he doesn't slow down. That he is smiling less than 10 minutes after a seizure. I love that he is playing and vying for my attention. Mostly, I love that he is mine and he is still here.

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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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