A million reasons for a cure...

   September is Hydrocephalus Awareness Month. Your first question is probably... What is hydrocephalus? Hydrocephalus is a condition in which there is an abnormal accumulation of fluid in the brain. There is no known cure for this condition, and the only treatment requires brain surgery. 

      Your second question is probably Why should I care? Well, first off.. There a million people in America alone living with this condition. I just happen to be one of them. Second, anyone at any age can develop hydrocephalus. 

        Let me tell you why this month means so much to me. After a brain scan when I was three months old, my parents learned I had this condition. Six months later, I was having brain surgery to insert insert a tube to drain this access fluid know as a shunt. From then on, my life was a big battle against the Hydro dragon. But it's never stopped me. 

        I've proven statistics wrong by having my shunt removed. But that won't stop me from raising awareness. This condition not only still affects me with what it's left behind, but I've made dozens of friends that have this condition. 

         Our normal is worrying whether a stomach bug is really shunt failure. We get just excited for shuntiversaries as we do for our birthday. 

          Some of our favorite people include neurosurgeons, therapists, and nurses. The typical for people with hydrocephalus is nowhere near the norm but that doesn't stop us. I just wish more people were aware of our normal. After all, there's a million reason to raise awareness, I just happen to be one of them.  

   

Goodbyes aren't forever...

    This week, for most colleges, is the start of the new year. It's been filled with mixed emotions for me. If you didn't know already, I had to do an extra year of high school. This meant staying behind at my high school while all my close friends were graduating. Don't get me wrong, I am so happy for all my Class of 2014 friends. But it's really hard to say goodbye. 

          These are the people I've grown up with. We've been together since kindergarten, some of them even before that. I know they will all do amazing things and I'm so proud of each and every one of them. 

           For now I'll have to rely on memories and modern technology, but I know they'll be back. But let's not focus on the goodbye, let's focus on all the memories and what will happen for us in the future. Good luck in the college world, Class of 2014! I'll be there soon! 

My last first week of school...

         So this week was my first week of school. But there was something special about this first week. This week was my last week of school. 

          I've finally made it to my senior year. I've been in school for seventeen years now. From that first day to my first day of senior year, I've had so many people help me overcome my obstacles. From helping me learn how to walk to helping me figure out what I want to do after highschool, it's all been apart of me being successful. 

              I can't believe we've finally made it. Class of 2015, it's our time to shine! May 23rd will be here before we know it! And don't forget where we started! 

I wouldn't change a thing.

   People often ask me if I could go back in time and take away my hydrocephalus, would I? And honestly I don't think I would ever take up that offer. 

    Honestly my life isn't that bad. I mean yes all those brain surgeries were a little bad. Those things can be sorta of a Debbie downer.  But all that stuff is a thing of a past. 

      However I've been provided some pretty cool opportunities because of my disability. Being involved with disability advocacy programs like I'm Determined and YLF has honestly changed my life. And then being involved with the Make-A-Wish program has given me some pretty amazing opportunities. I've also been able to meet some pretty great people through my disability. 

        Plus if I took away my hydrocephalus I don't believe I would be the same person at all.In all seriousness, I'd probably pretty bratty being the baby and the only girl of the family. But going through some of my own hardships has made me realize what some people have to go through. With my disability, I've gained this compassion for people in need. I just wouldn't be the person I am today without my experiences with hydrocephalus. So no I wouldn't change anything about me. 

It's okay to be curious...

    People often think that asking questions to a person with a disability is not okay. But that's not the case. 

    

     A couple weeks ago I was at lunch with some good family friends, but there also was two people who didn't know my background story. We were talking, and people started making excuses about why they forget things at times. I causally said, "Well I've had brain surgery." The person who didn't know me, said "Wait really?" It started a conversation all about my life. 

      She had all these questions and I enjoyed  answering all of them. I was so glad this person was brave enough these questions. It seemed like she was a bit afraid to ask the questions.  But she has no reason to be Wouldn't you want to leave the conversation more educated than curious? 

      

     It really is okay to ask questions. After all, there are no wrong or stupid questions. Don't be embarrassed when you or your child is curious and wanting to ask something. Questions are much preferred over weird stare. 

An Extra Special Poem

    I wanted to share with you all something that means to the world to me from one of my good friends, Alexus. It's a poem that she wrote. But it's no ordinary poem. It's a poem that describes her daily struggles as a person with a disability.  And it shows you that people with disabilities can overcome anything that's put in front of them! 

    But that's not the only reason Alexus's poem is special to me. To start off let me tell you a little bit about Alexus. Alexus is a rising senior in high school. Her dreams include becoming a novelist and living in New York. She has Cerebal Palsy, but that's never stopped her.  I met Alexus three years ago, and at that time she really didn't like to talk about her disability. So this poem shows me how much she's grown. So proud of you Alexus! Being the voice for those who don't have know you'll be on the best sellers list one day, and I'll be able to say I knew that girl before she was famous! 

Check her poem out here: 

http://youtu.be/3FqozdqZqrM

YLF A.K.A My favorite week of the year

   The Youth Leadership Forum VA has been my favorite week of the year for a couple years now. But let me tell why this year was extra special. 

 

    I was a YLF delegate in 2012 and my life has changed ever since that week. I no longer felt like I was the only one that had a disability. I was lucky enough for the past two years to be invited back as staff. And oh what an amazing experience it has been. 

 I get to have the chance to give students that same feeling of acceptance. This year we had a few students that didn't feel accepted at school and some of them had never even met another person with a disability. And to have them at the end of week say that they had so many new friends that understood their disability and accepted them for them was really a huge impact. I made a difference in these students lives. 

      But not only was there the acceptance factor the students made a huge growth. The same students who came in on Monday longing for their parents didn't want to leave on Friday.   

It was the same kids that told me they were nervous to present in front of the legislative panel told me they couldn't wait to present in front of the officials back home. They were now very independent individuals. On Sunday night, the staff were talking how long the week ahead of us gonna be, but  it turned out to be the most rewarding weeks of our lives. 

     To my fellow YLF staff members, You guys have become my second family . You all have inspired me to be an advocate for others. Thanks for the laughs, the tears and the love. Especially the love.  

       To the YLF class of 2014, shoot for the stars, you're gonna make it so far in life. Whether it be the goal of being a rapper or being a state trooper, I know someday each of you will make the goals you set within the last week. Remember we are always there for you. And don't forget to Persevere, Advocate, Dream, and Suceed! Here's to YLF 2015!