Thursday, September 1, 2016

September is Chiari Awareness Month!

It's Sept 1st.... the beginning of Chiari Awareness Month... and probably the best time to update Kay's blog! LOL We had a great summer! We have also had a great start to the school year! Kaylie has an amazing teacher this year for 4th grade... who happens to have a cousin that has Chiari. The cousin lives in a different state, but its nice that her teacher gets the basics of it all. 
As September starts off I start to see my Facebook timeline fill with everything Chiari.... purple ribbons, awareness messages, and videos... and reminders of walks coming up. But it quickly reminds me of what my past four in a half years has been like. In four years, I have cried countless tears, and even argued with just as many countless doctors. I have watched my daughter go through two major brain surgeries, all being 1,452 miles away from home.... 
I know doctors think Chiari is nothing, some may say "it's all in their head".... they're right! It is ALL IN THEIR HEAD!!... Literally her brain is falling out of her skull... to be literal! I'm sorry to all those doctors that we went to where her condition was not interesting enough, for them to give a damn.... I feel sorry for them, they are the ones that took a oath for no reason! I'm sorry for the patients that have chiari and go years and years till they finally find a doctor that listens. But as this month goes on and we posts are facts and purple ribbons, and walk miles for a cure...... if there is one thing I have learned.... is as a parent of a chronically ill child (and at that its an invisible illness).... TAKE CARE OF YOURSELF!!! We can not let this condition rule our lives. We can't take care of, advocate for, and give our children what they need..... if we have not taken care of us, FIRST! I will never be able to walk enough miles to see a Cure for Chiari in my lifetime... probably not even my great-grand kids lifetime!! That's Big Pharma for you! But I can take a step back.... and enjoy my life WITH my child, and help her learn how to take care and advocate for herself. 
I love this girl more than anything, and would do anything for her.... 

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