I have had this since I was 3 weeks old. I am blessed to know I am not the only one who shares the struggles of this very challenging condition. Advocacy is important for us who have to deal with it,as well as our families who see us go through this. It also has been a blessing to see the mindset of people starting to change ,in comparison to what it was when I was younger. I never thought I would live to see this day where I can speak for those who cannot.
Ten revisions may seem a lot to you, but I am not the “hero” here. The creator of our shunt system,is a “hero”.The surgeons, who didn’t give up ,are the “heroes”. The nurses, and the emergency staff, the EMS transports ,who see us in our worst, are the “heroes”. Those who went to Washington to get this condition finally recognized as it was supposed to be,are the “heroes”. The parents who stay beside their children in their illnesses and health ,are the “heroes”. The siblings who go to bat ,and protect their brother or sister ,from being bullied by ignorant people ,as mine did for me, are the “heroes”.Those who have had more revisions than I have ,and still manage to have a wonderful outlook ,and quality of life ,are the “heroes”. Those who participate in HydroWalks are the “heroes”. Those who endure every day, are the “heroes”. These are the ones I celebrate, as heroes.