Exactly who's child is this?

>> Saturday, February 8, 2014

On October 25, 2005 I lost ANY control that I might have had over the life of my son. For most parents, that happens when their child becomes a teenager and exerts their right to freedom. Freedom to make their own choices, good or bad and hopefully deal well with the consequences of their decisions.

For me, he was 2.

At the age of 2 he had his first seizure and so began the next 9 years of hearing:

It's very unfortunate to see.
It's just Autism, I can stop the seizures but you will have to go somewhere else for the behavioral issues.
It might just be a case of 'bad brain' and you will have to learn to live with it.

I was told NO for 5 years to the test that ultimately gave us our diagnosis. A diagnosis that, if it had been found earlier, probably would have stopped the deterioration the daily seizures caused and MIGHT have had a different outcome in 2011. He might NOT have been in non-convulsive Status 4 times that year. He may be a different child, with NO seizures. I am not exaggerating.

We trusted the medical community and we still do, cautiously. But I have NOT had real control over the decisions to the health and well being of my child since he had that first seizure. His seizures were made worse by some of the medication we tried. And I had to sign TWO waivers saying that I would watch carefully for a life-threatening rash. As I read the long list of side effects that these medications cause I saw things like: Sterilization, blindness, liver failure, and death. And yet, I opened his mouth and put the pill in. No parent should have to think they may be killing their child while trying to help them.

I still check his skin daily for new marks or rashes. Because even though he did not develop the rash immediately upon starting the medication he still could, at any time. And it could KILL him...in horrible ways. He literally would burn from the inside out.

We repress these possibilities, we do not dwell on them but this legislative endeavor has brought them all forward.

I am STILL turning my son's health over to someone else. A body of 10 people will most likely decide what is best for him.

And I can do very little about it because some are more interested in perception. Seriously...how it appears? THIS is YOUR concern? Pretty heartless and reckless isn't it?

I met a man who said he was speaking for me because I was being taken advantage of in a very stressful and delicate situation. Me? Really?

This man told the legislators this as well. He has a PhD. So they will listen to him. He doesn't care about my son. All the Doctors I begged for tests and denied me, they didn't really care either. And the legislators on Capitol hill don't care. Not really. And they don't care because the federal government called this plant Marijuana before they called it Hemp. And they DID call it Hemp. A few times, the latest time in the Farm Bill just signed into law.

Because of that term, I will hold my breath every morning and hope Bug opens his eyes.

Because yesterday, not only did I meet Mr. I-really-am-helping-you-by-helping-me-build-my-resume, but I met Marilyn. She is a mother to two Daughters that were killed by epilepsy. SHE is speaking for me. SHE gets it. And until the aforementioned man sits by his son's bedside and holds his hand while his heart beats 35 times a minute and he only takes 8 breaths in that same minute, until THEN, he does NOT understand anything about this battle and he DOES NOT speak for me, his very presence insults me and drives a nail into Bug's coffin. THAT is how he is really 'helping' me. By taking away any rights I had in making the decision for his well being.

Here's how you can send the message to Utah Lawmakers:

Like the FB Page - Hope 4 Children With Epilepsy
Go to the website: http://hope4childrenwithepilepsy.com/ and Click on How to Help.

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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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