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...

To All my Amazing friends!      You all have been the most incredible friends anyone could ever ask for! You have been there for me on countless occasions and never have turned your back or given up on me. I know this year things have been rough for all of us and things never seem to get easier but rather harder, but some how we always seem to make it through together and I know that will continue! We always pick each other up when we are down and go through the dark together so we can provide one another light! I am amazed at how amazing you all are. You always make me laugh when I feel like I need to cry and pick me up so I realize I do have people that will always be there. You are the most amazing people in the whole wide world!  I can't ask for better people to be my friends.      Laura - Where to begin .... we have been through so much together over the years but I feel like this year has especially tested our friendship. I know after...

I decided that I am going to start a 30 Day Letter Challenge and going to write letters to all these important people in my life on my blog. I can't wait to get started! Write a letter a day for 30 days • 1 - Your Best Friend • 2 - Your Crush • 3 - Your parents • 4 - Your sibling (or closest relative) • 5 - Your dreams • 6 - A stranger • 7 - Your Ex-boyfriend/girlfriend/love/crush • 8 - Your favourite Internet friend • 9 - Someone you wish you could meet • 10 - Someone you don't talk to as much as you'd like to • 11 - A Deceased person you wish you could talk to • 12 - The person you hate most/caused you a lot of pain • 13 - Someone you wish could forgive you • 14 - Someone you've drifted away from • 15 - The person you miss the most • 16 - Someone that's not in your state/country • 17 - Someone from your childhood • 18 - The person that you wish you could be • 19 - Someone that pesters your mind-good or bad • 20 - The one that broke your hea...

I recently have been reading a lot of poetry and below is one of the poems I found and feel is they way I need to live my life and look at my life. I tend to let myself get carried away with planning each moment out and worrying about what is going to happen next. I need to let go of control. One of the biggest things I have found is that with alpha-1 affecting my life there is no predicting what might come next or what bump or turn you weren't expecting might turn up. It is a continuing challenge to "live" not just in the true meaning but actually in how you live your life. I find myself getting to concerned about the next step then living in the moment and the step that I'm in and by the time I realize I'm trying to control everything I've missed out on what has been happening around me. Living is not just being alive it is enjoying everything life has to offer and not worrying about what is coming next or what could change in an instant because then you ...