Angelversary x2

>> Monday, March 16, 2015

There were two angelversaries this week. Two children lost a year ago this last week.

On March 11, 2014, my lovely FB friend and completely naughty Mommy, Laurie lost her lovely boy Andy to Otahara Syndrome. That loss was raw, emotional, heartbreaking in the midst of what we had going on at the time. When Andy passed, I spent an evening watching Bug sleep. Wondering what in his genetic code we were missing that could mean an early loss. I watched him breathe and sigh, the sure sign he is asleep. I cried for Laurie, such pain, I hope to never know but I have resigned myself to maybe feeling. I am a Mother, and a Mother of child with a scary condition that has no basis in science yet, it's a very real possibility still. The loss of Andy sat heavy on me.

Then a short 4 days later, little Miss Charlee finished her mission and took her last breath due to Batten's Disease . Charlee, whom I had touched and tickled. Charlee that had affected so many people and was adopted by the Utah Senate. She sat on the floor of the House of Representatives and, at lunch afterward, she closed her eyes, never to open them again. Charlee's loss was tangible. On top of losing Andy, I remember being overwhelmed with emotion that I had to repress. But I cried on Glenn. 4 times last year I cried on him about the loss of a child. 4 times he held me while I sobbed at the stars and begged the heavens for it to stop. He said: This is why you do what you do, because you feel.

Too much sometimes, I believe.

It's this dichotomy that I have been working to reconcile. But I don't think I should now. I think I should feel, I think I should cry, I should let the emotions flow, wash over me and through me until only I remain. I should scream at the heavens when Bug has a seizure, and I should expect few people to understand that after thousands of seizures, I am still angry that this sweet boy has to be tormented by them.

He is sleeping now, after a tonic/clonic seizure, after I held him and assured him that it would be alright, that I would not let anything happen to him. He is sleeping now, and tonight, I may just have to sleep next to him.

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The impact that 3ml can make.

>> Wednesday, March 4, 2015

Tonight I listened to the Utah Senate debate SB259. Aside from what I think, this is what I heard:

"Your cause is just, but I can do nothing".

And while it will have its day and a full Senate vote in the near future, the comments left me reeling.

I am glad and now I see, very lucky we have HB105. Because of that little bill, we have Bug's new treatment.

He may still be seizing, not as often for certain, but his life is so much better.

This is what he gets two times a day that reduced his seizures by more than 50% now that he is almost 6 months into it.

He smiles more, he responds to his name, school says he is making progress and just the other day, he was holding his little brothers hand.

I don't care how skeptical one might be about the efficacy of CBD, be skeptical, but do NOT ignore my boy. HE is proof that it helps. I have a part of him back, that part that I missed so much. I am realistic about it, completely. He still has seizures, but I didn't think he would ever just STOP seizing with the addition of ONE medication, not with his history and the amount of unknowns in his little body. But what we have with him now says that he is doing better, better than we ever thought possible.  He has good runs now, of a few days and even a week with no seizures, and this last week: 4 total.

So poo poo the medicinal value of cannabis all you want, but don't look away when I tell you: it helps a great deal. And that is FACT, not fear, not desperation, others are reporting it too. My little man has found a way to break down a part of that glass wall he is trapped behind.  And now I feel like we are handing him a hammer.

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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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