It's called being strong. And it sucks.

>> Friday, April 17, 2015

There's not knowing and then there's knowing you will never know. The difference is very maddening.

Years of waiting, of researching, of studying, almost a decade of being overlooked and heartbroken and still....waiting more. Of proving that Mother's intuition kicks ass.

Years of repressing the anger, of crying in private and holding him while he seizes. Thousands upon thousands of diaper changes and seizures. 9 years of watching helplessly while his brain is exposed to the training and changes that lead to continual seizing.

In order to feel like I am doing something, since every time I deal with a medical professional for my OWN child we get swept under the rug making me feel it's all hopeless and worthless, I began to do something to make me feel like my experience can help others. But lately I don't see the benefit.

I watched him seize this morning and I thought: this will never end until it really ends.

The highs and lows are taking their toll. I feel it, and I am almost done repressing it, of pretending I am strong enough to swallow the sadness and still be happy.  But the reality is: I have no choice in the matter so why not just keep doing all the sames things, getting the same responses, and making the same choices? Why not just let it go and accept the fate of whatever this unknown is? Is that in me? Am I capable of that?

I just miss him too much. :(

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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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