Silent sweet 16

This past Wednesday May 20th 2020, I turned 16 years old. My 16th birthday has been the best birthday that I have had in a long time, for the first time in many years my pain level was very low on my birthday. Since my 10th birthday, despite putting on a happy face, having small quiet celebrations, and getting lots of gifts, birthday were an upsetting point for me. The thing that I wanted most was to just not be in pain my birthday, and I finally got my wish (for the most part).

It’s hard for me to Believe that I am actually 16 years old now. Looking back, I thought about how ironic it is that the things that people used to tell me I was wrong about, are now the same things that people compliment me on fighting for. I think back about the little elementary and middle school girl, who was in pain and not believed, the girl who wished she had someone who understood what it felt like to get pain from sound. I realize that I am now that person, that my younger self wanted and needed.

I am so thankful to God, for bringing me this far in life, and for giving me the will power and intelligence that I need to fight for myself and others. I am so grateful, that the research is starting to come out to support what I have been saying this whole time, and to be able connect with other people with similar situations.

I am now a R.A.R.E. (rare advocates representing everyone) advocate, a member of YARR (young adult rare representatives) part of the EveryLife Foundation, and a WeGo Health advocate.