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Wednesday, May 23, 2012

I'm so done with this day.

 
I’m so done with this day.  I can’t focus. I need to get some air, but I can’t leave my own private hell.  To many fires to put out.  Mostly ones that I created, I’m good at that.  Sometimes it’s a good thing sometimes it’s a bad thing.  It’s only bad if you can’t clear the smoke away.  It’s just the energy that it takes to clear the air and when you create too many fires in one day, then it sucks the life out of you.

We’re all desperate for answers... the truth, help, and understanding.  We’re all running on borrowed time, our emotions are high; our nerves are rubbed raw. Our Sanfilippo community is as close as family.  I see my Sanfilippo families and scientist more then I see my own flesh and blood. 

Just trying to shake down the truth and find some answers.  I may have rubbed a few feathers the wrong way today.  But at the end of the day our Sanfilippo Community is family.  We need eachother, our childrens lives depend on our ability to work with one another.  We’re more powerful in numbers and we’re up against the hardest battle that anyone could ever imagine.  We’re sheep working with Pharma and the FDA (the wolves.)  It’s hard to tell which representative is just the wolf in sheep’s clothing.  It’s impossible to know, we just have to trust our instincts.

This was my day.

Then I saw this documentary and it put everything into perspective and brought me to a fetal position, I haven’t cried this hard in a year.  This is Jonah’s fate.  I’m working 7 days a week 12 hours a day, to stop this from happening to Jonah.  My families are relying on me to stop the disease from taking their children too.  Watch this mini documentary and you will have a better idea of what we’re up against.  I know all these families but 1 (the family that lost a child)  You should know by now that Elouan and Laura are part of our family