A Tribute to A Mother & A Little Girl I Have Never Actually Met

It is RARE DISEASES DAY and I just found this post on ‘my perfect breakdown.’ While we think about all of the children with chronic illnesses, we need to remember that their parents are going through unimaginable pain themselves’s.

My Perfect Breakdown

I am sitting here in what has morphed into my usual writing spot.  It’s a chair that we bought second hand, it has spots of wear that show someone loved it before me. I love each spot of this chair because I like to believe that someone likely sat here passing the hours doing something they love, much like I am doing now. I like to imagine the happiness that someone else experienced sitting right here, before me.

This chair, this spot in my home has become very special to me in the last few months.  It is where I get my creative genius and not so create genius on.  It’s where I dream about our future and remember my past. In this place I feel most connected to myself.  It’s silly because it’s just a space, but yet in the last few months it has quite clearly become my

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Hello Everybody,

Tomorrow is Rare Disease Day and I will be putting some things up all day in support of this great event.  I am doing this for everyone with a rare disease, but especially  my beautiful niece Natalie who has lived with a debilitating type of Ehler’s Danlos since she was born.  Let’s think about these people who are struggling alone.  In Natalie’s case their are only forty cases of her type in the world.  In other cases there are just seven or less.  It is difficult to get research or medications for each specific disease because the expense would be too high for so few people.  Please let others know that they are here and they are alive and seeking help!  ❤️

– See more at: http://rarediseaseday.us/raise-your-hand/#sthash.MAAN4tpv.dpuf