March 26, 2009- What is Life?

"The raindrops falling down express my feeling's on life,
sometimes very heavy, sometimes very light.
They never seem to come and they never seem to go,
but they are always there each day and every night.
Life is like a storm, sometimes very strong but
sometimes very calm.
Why do we have storms and why do we have life?"

I wrote this when I was 13. I was in Cedar Key sitting on the docks watching it rain on the ocean. Thinking back when I used to think about what life really is I used to get an uncomfortable feeling inside and I had to immediately stop the thoughts from chattering through my mind. I still wonder what it's really all about but I don't get that uncomfortable feeling anymore and I'm able to play the tape till the end now. I believe that somehow we go from being human to being a spirtitual entity full of joy and love and warm light. We are good in all ways like our creator. I still wonder though, is this it? Is life on earth all there is? It's so easy to let the reality of the thought crash in at times! In my heart I believe so much more, that's FAITH, the very definition in my world...........Peace & Love, Amy

March 20, 2009-Life is tough with CF!

Life is so tough for those of us with CF. It's full of challenges! Everybody has challenges but we seem to have more than our share. I have read lots of blogs now about individual experiences and I haven't met ANY of us that don't have lots of fight in us...we are a tough lot. I have noticed how blessed most of us have been by putting someone in our life that accept's us and love's us and support's us unconditionally. Is that the hidden blessing in being born with such a disease? Lots of people don't ever get to experience that kind of love, yet we do. It's amazing that God provides us with what we need in life to survive. The will to survive is something that I believe we will never comprehend because I don't comprehend it myself. The times I've wanted to give up and there's just that little piece of something that just pushes me on. Is that God? I have to believe that it is. I know it's real, it feels real. I'm also amazed at how God has provided people to care for our disease knowing that the outcome is not always what they want for us, but yet they fight with us and for us. What a blessed gift to have. Fight for faith in all we do and we will perservere. I know I will, I believe that with all my heart.

Peace & Love, Amy

March15, 2009- What do I make of life?

I wrote today on FB what do I make of life? I make the most of everything. Well that's a lie, I try and make the most of everything, on most days I'm successful but I fail just like we were intended to do sometimes. I wish I could be perfect but as I have learned "progress not perfection". I believe God never intended for us to be perfect otherwise he would not have given the life of his son for us. My deep thought of the day, maybe for the week!

I finally started my Zyvox today and have been off Cymbalta for a day now. So far so good. Life is so good today. I love my husband so much and I love having my sister in the house with us. It's refreshing to have a young one around although we do not agree on the same TV shows, lol. I have to get up at 4:30 AM to take her to work which will be a challenge. I usually don't see dawn until 12:00 PM. I do it for love though and I know that when you do good you get good. My life is good today anyway and I anticipate that tomorrow be the same. I am alive and that's what matters the most. I'm trying to find my way with this blogging stuff. Is it a journal or a story? I guess it's what you make it. My life is an adventure and I want to try and put that to paper or well the internet in this case. Technology is marvelous thing huh?

Peace & Love,

Amy

March 13, 2009-7 year's ago today!

It was 7 years ago today that I got a phonecall from Duke. "Do you want some new lungs today?" I started crying and said "yes". I will never forget how I felt at that moment. I know exactly what I was doing and where I was and who I was with, much like 9/11. The emotions are never far away. The bittersweet envelopes my thoughts tonight. In another hospital not far away a family was saying good-bye to their 13-year-old son. I cry for them now and the tears never completely dry up. A joyous occasion? I celebrate life but at what expense? That of another, I live for him, I live because of him, God gave me a gift and I will not forget to be grateful, not for a moment, not for my lifetime. This is an ode to Bradley who gave his life for mine much like God gave his life for us. How do you say thank-you? I live my life right and savor every moment. I love to best of my ability and I never ever forget why I'm here. I will never forget all the people who prayed and supported me and who cared for me during my life but more importantly I will never forget Bradley who lives in me now. I hope he is as happy as I am and has all the peace and joy that I have in life today. My life is exactly the way I always imagined it would be, "perfect". Thank you Bradley and thank you God!

Peace & Love,

Amy

March 10, 2009-My First Blog

Well here it is, my first blog! Today brought better news about my friend Shannon, who is a transplant buddy. We are getting ready to hit our 7 year anniversary and she had some problems on a cruise this weekend. She and her husband are celebrating 10 years of marriage. Yay! I was really worried yesterday but got some much better news today. As for me, I am battling a little infection right now that has me coughing quite a bit. It's not like I haven't done that before though, LOL! Duke is keeping a close eye on me as they always do! My sister has come to live with us for awhile and we are transitioning into a new schedule. It's going rather smoothly. You will be happy to know that she has noticed that I have mellowed quite a bit over the last few years. I think I owe that to Roger being so steadfast and grounded. She got a job at Panera Bread today so I will be eating lots of bagels from now on........my weakness is asiago cheese bagels. It was a great day to be alive once again, I never take a day for granted. Till my next blog, peace & love, Amy