i havent wrote in a very long time. While a lot has happened I have been busy and kind of got caught up in what was going on and trying to handle everything.
Its been difficult. An outsider looking in wouldn’t know just how difficult the last 9 months have been as I’ve been working to hold it all together and do as I’ve always done and just dealt with each day as they came.
I’ve just returned from my LPA convention in Denver where I was told by a doctor that was at the convention that they had read my blog. It was amazing to hear that she had come across it and she was so glad to have the chance to meet me in person and hear my story.
I often forget how important my story is because to me it’s just my life and who I am…I forget that I am the one writing this story and helping to form information on Saul Wilson Syndrome. There is nothing out there on this dwarfism, I am the voice for the dwarfism.
After being in meetings the last few days and listening to how important this research is, I’m trying to keep in mind that while I may stand alone on the search for answers…I do have to make the stand and work to make the connections. My future depends on it and along the way I may learn more than I intended too.