2.06.2015

Kindness of Others



I wanted to share some exciting news today!!
 
Our friend from Kansas, who I grew up with as my Kansas family, Kurt sent me an email last night saying him and Tony Ramey, the country music recording artist  he works with    wanted to get involved with this years HDSA Convention. Kurt is a very talented song writer and is passionate about music. Music is also very important to me and my journey.

Kurt had a few ideas for the convention. One of his ideas was to have a song he wrote a few years ago, 'Hearing my Song' be compiled in a video with pictures, quotes from my blog, and facts about HD. It would be a video of my trials and tribulations. We could play it at the convention.


The lyrics: 
I gotta be so selfish sure the way I play it even though nothing's really changed 
But I can't let them see the sweat, the tears, and the heartache so I'm learning how to hide the pain

Like a candle flame way out on the ocean it Burns so dim it's like it's not even there 

Can't wait to see their faces when I show them a light I always kept and hid

So excuse me if it seems like I'm lost in a dream. It feels so real so close It's all that I can see. I'm going to fake it until I make it and do every thing I can to stay strong and someday they will be hearing my song hearing my song


Well there's times I admit its hard not to get discouraged and sometimes the fight takes the fight right out of me.  But I know the scars I get along the journey they wil remind me ain't nothing In life Is free.


Someday just know that someday they wil be singing my song

 It's the perfect song for me. He really gets my struggle.   I have hope and faith that my awarness and advocacy  will lead to better treatments and a cure. I won't stop fighting untill everyone is singing my song. That last lyric is my favorite. If you would like to hear his song click the contact me button and send me an email  and I can email it to you.

Another idea of hisq would to write another song based on the new HDSA motto family is everything and have Tony perform it at the convention.
I am in love with this idea and the new motto because family really IS everything. Kurt proved that family isn't always blood it's the ones who support you through everything.

Kurt is in touch with the HDSA to receive permission to do his ideas, but even if he can't perform it or show the video, he's still going to write it for awareness. I think these are amazing ideas for awareness. 

This couldn't have come at a better time - I was beginning to 
wonder if people still love me despite HD,  if people knew how to deal with it, and if people knew how much I really struggle and fight. Kurts email demolished all of my negative thoughts becuase he truly comprehends it. My faith has been restored in my family and friends with one email. Thank you Kurt, Tony, and Marozas family. 

Family is everything,
Alexandra