Tuesday, March 10, 2015

Words Set Free

   I have written, deleted, thought,written more... copied, pasted... then deleted again. I have been fighting an internal battle of words and thoughts. I don't know what to write and what to keep private, to myself. My already thin filter has been worn out. Which means that you are going to get a very honest me. Yes my blog is an autism blog but it is also about our whole family. I also know that there is a very high percentage of autism moms/autistics, (ones who are both), who are living with autoimmune diseases, cancer, mitochondrial diseases, diabetes and others that I can't bring to mind. How do you live in a constant state of unknown? Life goes on even if you aren't able to.  
   I seem to get the same questions asked over and over, but with different words. I am tired, scared, and I am hating my body. I have thought about making a helpful list that might help you if you are in my situation. I am a list person. I am always making lists. Sometimes my lists have sub lists. 

But... I deleted them too.

My thoughts are only partially formed. Like a bubble, they burst before they have even left the wand.

Disappointment: the feeling of sadness or displeasure caused by the nonfulfillment of one's hopes or expectations.
   The last eight months have been filled with one disappointment after another. I don't know when or how it will end. I have found that I will have one or two good days surrounded by a whole lot of bad ones. Lately, every day tasks like standing and making dinner has been a challenge. I am realizing that I may never be able to name my foe. Living with a rare and unnamed disease is... it's uncharted land and no one can give you an answer. Somehow, I keep thinking that knowing what it is might help me feel better. At this point I think that it is more of a dilution. Or it could be my carrot to keep me going even when its hard. Maybe just one more...blood draw, MRI, biopsy, or other torturous test. Then I can be fixed? 
   I think that I am ready to let the words go. So many in my head, its getting crowded. Writing frees my thoughts from the prison that is my brain.
   I will always be grateful for all of the kind friends that have been there for me. The calls, texts and messages. They have been the sun shining through my cloud filled sky. The understanding words from others are rare treasures. I want to end this with a quote, one of my favorites...

For all of us who have dragons to slay.
"Fairy tales are more
than true; not
because they tell us
 that dragons exist,
but because they tell us that
 dragons can be beaten."
                                       ~G.K Chesterton

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