Lately I've heard from someone that my blog posts are too negative. Looking back through all of them, I really don't see that. I really shouldn't be giving any more attention to the 'haters', the ones who just want to pick me apart to make themselves look better (or smarter, I don't know), but since they don't want to actually come talk to me about it...
YOU don't know what it is like to live with Hydrocephalus. I do. YOU don't know what it is like to go through 6 brain surgeries, an eye surgery and a triple hernia surgery - all because of the Hydrocephalus. You haven't had 3 surgeries in a year - for a condition you can't control. You don't know about all the other physical issues I have to deal with daily, because of the Hydrocephalus. You don't get the daily headaches that I do. You don't have to wonder, DAILY, if this strange feeling in your head, your eyes, your stomach is shunt failure, or just regular old normal people flu. You don't even know how to pronounce Hydrocephalus! You have no idea of the affect this physical condition has on my brain. You aren't even able to explain what Hydrocephalus is. You have never bothered to read any of the educational materials I have given you, which explain how Hydrocephalus can affect the way I learn. You have never gone to a conference and met others with Hydrocephalus. You have never been there when other kids have bullied me because I was different. You have never been there when I didn't have a friend, because kids thought I was different. You have never had to deal with an administration that tells me to my face that I don't have a disability and the only way they will make accommodations for me is if I get a diagnosis of ADD. You have never been there when teachers have chosen to ignore my 504 plan, and instead made fun of me in front of the class. You have never had a teacher LAUGH at you when you tell them that not too many years ago, people died from Hydrocephalus. You have never dealt with any of the school systems, and having to continually educate them about their ignorance towards kids with disabilities. You have never helped me when I struggled with school work. You have never been there for one of my surgeries. You have never even noticed when I have had a surgery! You have never been to any of the hundreds of doctors appointments, MRI's, ER visits, or physical therapy visits (just to name a few). You have never had to miss so many days of school for doctors visits or because your head hurts so much, that the school starts penalizing you. You have never been to, nor donated to, any of my fundraisers.
But you know who DOES get it? My mom, who has watched me struggle daily since the day I was born 7 weeks early, almost 19 years ago. My grandma, (my mom's mom) who was right there too. And my grandpa (my mom's dad), who was also right there from the beginning and took night shifts at the NICU - who was the main babysitter for me, my twin sister who died when we were 8 months old, and my younger brother. The only babysitters my mom trusted were her parents. My mom's older sister - a teacher, who is constantly sending me books and looking for new ways to help me learn. My friends who have Hydrocephalus, and their parents who have also dealt with it daily.
You think that just because you have experienced something completely different, because you know of a person with a disability, that somehow makes you an expert on what I experience on a daily basis? No, it doesn't. You have not even spent enough time with me to read my blog, and hear my voice saying it. You only read it in your voice. And YOUR voice is negative. Not mine. I am truthful. I am honest. And maybe the truth of Hydrocephalus is too much for you, but I am trying to explain to the world what it is like living with an invisible medical condition that never goes away. You have chosen to judge me. I suggest you educate yourself, before you claim to be an expert on me.
You have no idea where my scars are.
