The Road Home

>> Wednesday, April 22, 2015

Bug's seizures have calmed down now that he isn't as congested and sleeping better. Sitting at one a day for the last 4 days. I'll take it. Even more surprising; he let us do this:

Why is this a big deal? If you don't know, it takes effort and neurological 'muscle' to turn hands-up and sustain it. We have never been able to take a picture of his palms without holding his hands for him. AND we got 4 pictures of his hands open. His spinning toy was sitting next to him but he sat there while we photographed ...hands open. It stunned us.  Thank you Epidiloex. Thank you Cannabis.

About that....this last month the Idaho Senate passed a bill, (Senate Bill 1146)  the House Committee rejected and then REVERSED their decision on the bill, the House then passed this same bill and then, last week, the Governor vetoed the bill. Vetoed. And then he throws this gem out:

"Of course I sympathize with the heartbreaking dilemma facing some families trying to cope with the debilitating impacts of disease. They find themselves grasping for an answer - any answer that might help reduce or eliminate the pain and suffering, or that might provide some hope for a better, healthier future."

Well, of course he does (sympathize) no one wants to be the insensitive ass that says no to dying children.  His statement is not anything I haven't heard before but I still the feel need to share my thoughts on what this statement DOES NOT address.

First: There IS no dilemma. That ship has sailed. The research that exists, the children and families that have had access to and are using cannabis for various conditions are no longer being silent about it. They are telling their stories, sharing their good and their bad, it's all there, in the interwebs for any reasonable parent of a child with a severe and potentially life-threatening condition to peruse, cull and base their decision upon. It's everywhere and the nation has not yet fallen apart.  The question for legislators now is: how do you get ahead of it?

Not by negating its safety and efficacy for a variety of conditions, not when there are people standing in front of you testifying truthfully to its impact on their quality of life. You do it by allowing your citizenry access and you follow their progress. You partner with the people that have placed their trust in you to continue to trust YOU to watch out for their best interest. By slyly saying: I do not believe you, you are calling people liars, people who have NOTHING to gain BUT hope for an improved quality of life.

Parents are now becoming criminals. It's that simple. They are not going to be dissuaded for any reason, from trying a cannabis-based treatment. They are now willing to take it further then ever before, just so they can rule it out. And guess what? They are completely OK with it. You forget, these same parents have held the hand of their dying child, helpless to do anything, they have heard the words 'kidney failure' and had to stop the drug that was helping the most with seizures because it was killing their child. They have buried their children and will NOT let that happen again.

Second: If you have never heard 'Idiopathic', then there is NO way your platitude will placate those that have. Stay away from even alluding that you know what I, what WE are going through.  WE came to YOU to help with our problem and we provided the very reasonable, scientific-backed solution and you say only that you understand the desperation? What? If you did, you would NOT say we are grasping as if we should be doing something else.

Third: Hiding is never done from a position of strength. And by saying there is no research to support the request from parents and patients is not just a lie but a denial of facts in hand. Let me provide you with a link to research we compiled a little while ago for those of you that haven't learned how to use Google yet:

http://hope4childrenwithepilepsy.com/research-links/

And lastly: I give you Glenn, my son, the light in my day. Glenn, who has found his way home.

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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.

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