Another young person lost to Chiari.  Another life ended.  Another family with no mother, wife, sister, daughter.  Its days like today when its all too real.  Almost too real and too raw to deal with.

Kelly Morrill Obituary

You like to think that it will never happen to you.  That this is NOT what you have wrong.  That this person’s life and condition was somehow vastly different than yours but then reality hits and you understand that you are all in this together.  As a vast majority, Chiarians are misunderstood.  They live with crippling pain daily and because no one can SEE their illness they are expected to function.

Medical Notes:  Owen has the flu.  Yes, THE FLU, Flu “a”.  So Troy is out getting Tamiflu for him right now.  We have been busy for the past few hours sanitizing the house and making Owen’s room into and Isolation room of sorts.  What angers me is that the teacher did not send him home.  She barely even acknowledged that he was sick.  Knowing our situation with Kyleigh it infuriates me.  I cannot even explain and I must just pray and meditate on this lest I tear into someone (not really… but I can give a good tongue lashing every now and then).

Today has been a challenge medically for our whole family.  After continual upped doses of meds they just are not effecting my seizures and headaches.  When I say headache… I must explain.  This is not just ANY headache.  This is a “i-want-to-rip-my-own-eyeballs-out-and-shake-my-own-brain” type headache.  One that literally hurts your entire body and disables you.  Its really more like a body wrecker… than a headache.  I know its because the weather is so crappy and because of the seizures but “knowing” doesn’t make it any better.  Troy is frustrated because he has no idea what to do or how to help short of getting on the phone and beating down the doors of ANY doctor who will listen!  I cannot imagine his position at the moment.  Its hard enough to deal with this one.  When its your child… there is something that rises up in you.  That animal “right” to defend them.  When its yourself you cannot even think clearly enough to function let alone fight and it sucks.

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