Learning To Live

So I finished writing this, I think. Here you go: The other night I was at a party, and as everyone was sitting around the campfire chatting the topic turned to pain and IVs somehow. I really don't think I had anything to do with this topic change, surprisingly. One of my friends commented on how much it hurts when an IV is pulled from your hand. I assured them that it's much more painful when the PICC line running from your elbow to your heart is pulled out. All 54cm of it. Another friend of mine commented on how much her back hurt - and my first instinct was to throw her out of her chair for even mentioning back pain. The second instinct? Show her what real pain is. But I would have no idea how to inflict this much pain on someone. I'd have to call my old buddy Himmler. My back pain is so bad that I can barely stand. Sitting for long periods of time hurts. So mostly, I lay around. This morning it hurt so much I couldn't get out of bed. I literally couldn...

I have a photo of my parents and me when I was a baby. I have it in 8x10 framed in my bedroom. It's always been framed in my bedroom - ever since I was little. Two weekends ago we went through all the photos in my parents' basement to look for old photo frames I could have for my redecorating project. We came across a huge by huge copy of the same photo. I had never seen it hanging anywhere, and I didn't even know it existed. And that's strange because when I was young I had a hobby of looking through everything in the basement. Maybe I was looking for treasure - but all I found were family photos and Darin's Legos. For me, the photo a little too large and a little too 80's to hang in my place. I have the 8x10 that will never move - but the huge by huge? It's just too big. The people are almost life-size - and that means the large glasses are almost life-size too. Why I'm writing about this photo is because my mother pretty much ruined it for me....

Tonight I know my CF is a gift. Because of my CF I have met wonderful people - my CF Family here in town. We were all gathered tonight for our group meeting - and there were so many of us there it was wonderful!!! I know my CF is a gift because if I didn't have CF I wouldn't have met my wonderful CF family or my social worker Damien, who if basically Obi Won. I'm so excited to work closely with him this summer and learn from him. Working with him will be so much more than earning a degree in social work. It will add to my degree in LIFE. And that's what I have. A degree in Life. After tonight's meeting I called my parents and put them both on the line. Dad was worried when I first asked to speak to both of them at the same time, and I said, "Don't worry, nothing is wrong. I just want to talk to you both." And I thanked them. I see the other CF people who have to work themselves basically to death just to get by - and they have to make decisio...

A couple years ago my dad made me a sign for my birthday. It has a postcard of a golden retriever and the words "As long as one and one are two, there could never be another father who loves his daughter as much as I love you." It's the best present I've ever gotten. It sits on a shelf above my bed where I keep my collection of angels. It's on my angel shelf. Dad made it because of a Paul Simon's song "Father and Daughter." Everyone knows Paul Simon is my favorite, and this song is special for me and Dad. The lyrics are: "I'm gonna stand guard Like the postcard of a golden retriever and never leave until I leave you With a sweet dream in your head I'm gonna watch you shine Gonna watch you grow Gonna paint a sign So you'll always know As long as one and one is two There could never be a father Who loved his daughter more Than I loved you Trust your intuition It's just like goin' fishin' You cast your line and Hope you...

He has written me another parody song. He is a brilliant man. And again, I have no idea how to find anyone to date who will be as cool as my dad. Here's the song (To the tune of Gene Autry's "Back In The Saddle Again."): I'm back in the hospital again Couldn't get me a room So I camped in the lounge Found me some meds But the pole had to scrounge I'm back in the hospital again Got some crud in my lungs So need some therapy Just hope they don't screw up And put me is jeopardy I'm back in the hospital again Got get on my feet Be be as good as I can be Got to get stronger soon So I can go see Italy I'm back in the hospital again Got the walk comin up pretty soon Gotta make some dough for the the cause Gotta fight CF and help out research Hope to fix those old gene flaws I don't wanna be back in the hospital again ~~~~~ I love it more than words can express - and yeah, that was a part I forgot to mention - they had a hard time finding an IV p...