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! 

Family isn't always blood...

"Family isn't always blood. It's the people in your life who want you in theirs. The ones who accept you for who you are. The ones who would do anything to see you smile and who love you no matter what." - Unknown

Family is only one word. But it has so many meanings. My family members aren't only the ones that are related to me. I consider my relatives,friends, community members, church congregation, my fellow I'm Determined leaders, and the YLF alumni a part of who I call family. The definition of family doesn't have to only include your parents and siblings. The term family is used way beyond it's original meaning. Sometimes you have to make your definition of family. Find the people that stand by you no matter what, the people that love you for you, those are the people that are your family members. Don't let the word family define who supports you. 

"Do Something."

Service to others is an important characteristic of a disciple of Jesus Christ. A disciple is willing to bear other people’s burdens and to comfort those who need comfort. Now thanks to growing up in my church and how my parents raised me I have always understood this concept.From the time I was little, Serving others has always been part of my life. But let me tell you why it has become so important to me.

For those of you that don't know me or my background story, Let me start with a shortened version of how I got to where I am today, When I was three months old I was diagnosed with hydrocephalus meaning too much fluid on the brain. The only treatment required brain surgery to  have a tube called a shunt  placed in my brain to drain the excess fluid. I've had to have dozens of surgeries because of this condition since then. Strangers in scrubs became family that fought for me in more ways than one.  The first few years it was like a never ending roller coaster. Back and forth to the hospital.  One brain surgery after another.  It settled down when I was around four years old.

Things were okay and at bay until the winter of my eighth grade year. If you ask my mom I started acting a little crazy, had some headaches, and had to have yet another brain surgery. The roller coaster of brain surgeries, hospitalizations, and doctor visits started once again. And my time as a "frequent flyer" began.  But don't let me give you the wrong picture my admissions to hospital were never dreary even when I was at my sickest. My hospital admissions were always filled with visits from therapy dogs, meeting local celebrities, staying up way too late at night with my favorite nurses talking about well.. what us girls talk about, and most importantly LOTS and LOTS of laughter.

During my times at Children's Hospital of Richmond, it was like I was at home.    The people that work there are like a second family, and other patients at times were one of my only ways of support.I was given many stuffed animals like this beanie baby, pillow pets, blankets and even a few disney princess dolls. And if you know me, I LOVE Disney. These items were donated by complete strangers, and they ended up in my hands. It made me feel special and loved.  They made the gray hospital room a little brighter, and the pillow pets made it a little easier to sleep in the not so comfy bed, but other than feeling loved it really didn’t do anything for my mind. I still sat in my hospital room watching the same tv shows, and completely bored.  The DVD and games the staff had were aimed towards elementary age children. So I really didn’t get much out of that…

 When I felt up to it, I walked the halls with the child specialist and one of the other older frequent flyers. There was laughter and smiles as we made laps around the pediatric floor, but there was still something missing. All of the kids under the age of 12 had a special room where they could hang out, there was even one for the infants and toddlers.

These rooms were filled with really cool age appropriate toys, but kids over 12 had no where to call their own, and the child life specialists barely ever had donations  that were appropriate toys or items for that teen age bracket. And I found out that this situation is actually a common occurrence at hospitals all across the country. That's  when my brain started thinking Why doesn't someone do something? This just can't be...  Disney princess dolls and batman action figures are nice, but what about us teenagers? We get hospitalized too! It didn’t make sense to me.  

I questioned all of those thoughts  that had been racing through my mind for the next few months, but then it hit me that I didn't have to look for someone to do it for me  I could be the one to change this and make teenagers in the hospital feel at home, and have things to make those long days when the doctors tell you stay in bed pass by a little quicker. I started simple with just asking you guys to help me collect items. My first donation was actually from Debbie Beyer and Brenda King after they heard that nothing was really ever done for  hospitalized teens, and I will be forever grateful for the day they came to visit me with a huge basket in arms for the child life specialist  because after that day the idea hit the ground running, and something spectacular was created.

I have testimonials of other frequent flyers:

~There is  a young lady that's been in the hospital for several months now who has really had a roller coaster of a hospitalization... from very very sick to doing amazingly well these days. She went from not being able to speak to being able to sing all the time. She LOVES Taylor Swift, Miley Cyrus and Adele and is learning how to play the guitar with our music therapists. She loves to snuggle with our dogs on call and make beautiful crafts and art work with child life, art therapy and volunteers. She's VERY proud of how far she's come and always wants to be an inspiration to others that they just need to keep faith and keep trying and loving life.

~There's a young lady who is very very sick right now and may be here for many months recovering slowly. She has a younger sister and brother who have been here as often as they can just to give her support and love and even got enrolled in hospital schooling since they were at the hospital so often. They have an incredibly tight knit family who share love through their cooking, their stories and their support.

~There is  a young man who's had a rough time these past several months, losing a mom and a brother in a relatively close period of time who is also a chronic patient with us. He's very sweet and loves attention, loves remote control cars and helicopters, legos and action figures and is always very creative in his play.

I started getting donations from all over the state and the child life specialist told me she was getting donations in my name left and right. And it was all because I stopped questioning, and started doing. My work for the Children’s Hospital is never done . Although all this has happened, This has become one of my ways to serve, but there is so many things you can do to serve others.

 As Galatians 15:13 says 13 You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh[a]; rather, serve one another humbly in love. 14 For the entire law is fulfilled in keeping this one command: “Love your neighbor as yourself.”[b] 15 If you bite and devour each other, watch out or you will be destroyed by each other.  In order for us to show our love for God we must show our love to our community members. When Christ calls us to follow Him, He also calls us into a life of service.  He came to this earth, not to be served, but to serve. But as the bible shows us,  serving other’s doesn’t always come easy. it infact can be one of the hardest things we try to do. Often times, We think that we have to go out and do something huge in order to be serving others. But it’s certainly not that way. It can be a simple act of kindness or  You decide to take action and so You don't have to be involved with something big to serve others while serving the Lord.

You don’t have to be a certain type of person to be able to help someone. Young, old, rich, poor we all have the ability to show God’s love through serving others. And then sometimes in our journey of serving, we find roadblocks, someone might react negatively towards our service or we find we don’t have enough money to do a projected project.  But that shouldn’t stop us.  And you guys have shown me that is possible to do this.

Most of us definitely do their fair share of service for others. But have we all found our sweet spot of service? I know mine is making a difference for the teenagers at the Children’s Hospital. But your’s is probably something totally different.  Not every type of service is a perfect fit for everyone. It may be giving back to the place that has given so much to you or you may find a cause that just really calls to you. It doesn’t matter what you do to show God’s love to others, Giving Money to an organization… Donating items to local places in need.. Service to your very own community.. Flying across the world for a mission trip.. These are all service projects that you might find yourself in as you go through life. Just like jobs, Your sweet spot of service may change over the years, but there’s always something out there. Whether it be big or small, I believe that God has something for each and everyone of us to do. We just have to be willing to step out and find out what our “something” is. And remember no act of love is too small after all it may just turn into something spectacular.

The Fault In Our Stars

The Fault in Our Stars

By: Emily LeSueur

Being a teen is filled with enough angst as it is. Throw cancer and true love into the mix and you’ve got a plot that has sent teens running to the nearest bookstore. The Fault in Our Stars by the award winning author John Green is about the continuous struggles she faces from failing organs to wanting nothing more than to be an average teenage girl.     

Fighting thyroid cancer since she was 13, her days are numbered. The only reason she is still alive is because of an experimental drug. Thinking her life is coming to an end, she attends a support group for  kids with cancer… and her fairytale love story begins. But don’t you worry: this is not the average, sappy love story.

Augustus Waters is almost too good to be true. He’s good looking, sweet and  is a former basketball player who has lost his leg to osteosarcoma. The two have an instantaneous connection, and soon fall in love. In books, love at first sight can be a reality, but what Augustus and Hazel have is special.  Not everyone can understand what it’s like to be a kid battling cancer, so it is like fate when the two of them met.

The two teenagers  go on many adventures, with Hazel’s oxygen tank in tow, trying to make the most of the time they have left together including a trip across the world. Augustus wants nothing more than to give Hazel everything she’s ever wanted, until a twist in fate comes their way. This  leaves their world of love and happiness turned up side down.  

Green does an amazing narration of the ups and downs of these two teen’s lives  and the ups and downs of being a kid with cancer. He will leave you in tears at times from some events, but also in uncontrollable laughter at others from the way he portrays the characters’ subtle humour.  As he portrays the two characters, they are just average teenagers, but with a time limit on this earth. The two’s biggest struggle is not their cancer diagnoses, but how they will allow  their stories to be laid out, and who will be in their stories. The two teens have the choice to put each other in their lives, but they seem to have no regrets,  As Augustus puts it, “You don’t get to choose if you get hurt in this world… but you do have some say in who hurts you. I like my choices.”

The Fault in Our Stars reached the New York times best-seller list, and has incredible ratings. The book attained so much attention that a movie based with Shailene Woodley and Ansel  Elgort making the love story of Hazel and Augustus come to life will be released in theaters June 6th.

Mission Madness: Taking the First Step

This past weekend our youth group participated in Mission Madness. Mission Madness is a state wide youth group retreat where we focus on..well.. mission. The whole theme for the weekend was "Step By Step". We learned to take the first step even if it was out of our comfort zone, and then take each step together with the people we are serving.
We participated in mission sites where we shoveled and spread mulch in a garden that would help feed the hungry this coming summer, another site broke down bikes to be used for scrap pieces to build new bikes for people that had no other way of transportation.  The thing that impacted me the most from the weekend first started out with a short story that one of the leaders shared Saturday Morning before we went to work. Growing up, his family didn't have as much money as others. He received two boxes food every Saturday morning. He didn't think much of those boxes until one Saturday morning in high school when he opened the door and two of his classmates were standing there with the boxes. Those two classmates no longer treated him as one of their peers, they treated him as a project. The people we serve should never be treated as less. We should walk together with them on their journey, not look down on them. I thought about this whole concept and the story that the leader had shared all day while I was spreading mulch. Little did I know that this concept of stepping out and stepping together would soon come to play in my life. As I was eating dinner Saturday night, I recognized a familiar face. I realized it was Maura, a  girl from the Virginia Hydrocephalus group. I had never actually met Maura, but our moms had talked a little online and I had seen her updates on her recent struggle with brain surgeries and hospitalizations. Now If you know me, you know I'm a bit timid when it comes to talking to new people. So Beth and my mom had to talk me in to going up to her that evening. But Boy I sure am glad that those two talked me into it. I didn't know it, but Maura had been searching for someone that understood some of the things she's going through. I was in her shoes of constant hospitalizations just a few years ago. But now since I stepped out, we'll be able to step together in our paths with hydrocephalus. Without all the talk of stepping out and stepping together I probably would have never gone up to Maura. For Maura and I to show up at the same Mission Madness weekend is quite frankly a miracle. God works in mysterious ways to have two teenage girls fighting the same rare condition. He's put me to work even beyond the mission site from last weekend. I hope God will continue to work through me to provide Maura a since of comfort and understanding, and I thank him for putting me for on that mission trip last weekend.

What the Spread the Word to End the Word Campaign means to me...

     Growing up, not only was I labeled as a kid in Special Education by teachers and administrators, but my peers automatically assumed I was something less than them because I was in Special Ed. There was times when I was told you can't do that, you're in "retarded" classes. It was hurtful. I held back tears as they tried to tear me down. It made me feel like they thought I was defective. What they didn't realize is I'm just like them. I'm a daughter, I'm a sister, I'm gifted in writing, I like to hang out with my friends, but most importantly I'm a person.

       You don't even have to use the "r word" in a hurtful way. Behind your friendly face when you use that word, I know you think that people with disabilities are less than you. But we're not.

   We are human beings just like you.  People don't have the right to label you just because of your differences. Everyone has differences, but sometimes our differences stand out a little more. That doesn't mean they can’t do what you can do.  Not only do you hurt people with disabilities when you use the "r word", you hurt the ones that love them. So think before you say, and eliminate the "r word" from your vocabulary. It hurts more than you think.