Breathing Hope!

I am scared, I don't know what the next step is. I don't know when things are going to get worst but I know that you aren't going to get better and it scares me. I feel like it can't get any worst. I am scared of losing you, I don't want to loss you, you are my Daddy, and I am you little girl and what will I ever do with out my daddy? I am not scared to admit every time there is a doctors appointment I am scared, I worry, and I don't know what to do. I just wish I could make it all better and all go away, for you , for everyone. I have found over time that being scared is not a sign of being weak, it is a natural feeling and if  I wasn't scared I think I would be worried why I wasn't. Alpha has changed my life forever. It has made me fear so much, fearing loss, and sickness. I am scared everyday. People tell me to just enjoy the time I have which I try my best to do but that's extremely hard when there is so much stress surrounding the situation. It ...

I can't believe the first week of summer is over! I did alot this week! I feel like I fit enough for a whole month into the week. Of course I spent some time with my parents. My dad and I watched plenty of phillies games this week as we always do and we are starting to get use to being home together all the time which trust me took some getting use to. Last Sunday was fathers day and I am so thankful to have such a great Dad who goes through so much but still will do anything for me. I can't ask for more then that. Sunday evening my mom and I went to the opening concert of Glenwood Avenue Music which is a new music school my flute teacher is opening! The concert was great!!! Then on Monday I helped my friend Laura with a project and had flute lessons. It was a pretty laid back day. Tuesday I relaxed and just chilled out at home. It was much needed! Wednesday I went to crafts with my grandmother which I do on wednesdays in the summer. My grandmother is part of a group of older w...

I have not written in  a couple of weeks. I was going crazy! The end of the school year is always an extremly busy time for me and prevents me from having much time with out my noise in a text book or completing a project. Now that the school year is over a lot of stress has been taken away and the craziness has disappered for a little while. Summer for me is always 8 weeks to chill out, the rest of the year I am going crazy from place to place and never get a chance to get some air. Summer is also a time now that my Dad can no longer work to spend some quality time with him and get to create some memories with out taking a big trip or going on some sort of adventure. We create the memories and laughs at home right in our living room, often times it occurs in front of the TV when we are watching the Phillies who are my Dad and my favorite team. We get a chance through watching the phillies to share time together and enjoy watching the game together. My entire life the Phillies will...

We use to Travel to Killington Vermont numerous times a year before my Dad was diagnosed with Alpha. We use to go for long weekends or weeks at a time. We would ski all the time and I was one of my Dad's true passions. He taught me how to ski and took me to the top of Killington when I was only 6 weeks old because he was eager to have me be at killington for my first time. Killington is a place of so many memories for my family. As I said before I had been going their since virtually the day I was born. My parents had learned to ski there and had been going for many years before I was born. Its a place that my family can remember life before Alpha it takes some of the pain away to think about the times we would ski in the silence of nature together. It was a way we spent quality time together. For me this weekend when we went back for my Cousins College Graduation was extremely hard. It made me think of all the good times but made me sad inside to think that we never will be able t...