what happens now?

[AbsintheSorrow]

One thing that my boyfriend always calls to my attention is how I don't take most stuff for granted. We were out on a walk late one night and it started to rain. I just stood in the rain laughing (I love rain), and it rubbed off on him. He started laughing too, and we ended up just standing in the rain for a little while. Most people would've run home to get out of it, but I find the littlest things so cool. That's one thing he says he positively loves about me. So yeah CF sucks, but it can also make you a better person. He says I never take a single thing for granted, and I enjoy so many of the little things, and it always makes him smile. I just like pointing the things that CF made better about me to new parents' attention. So that's one. And I don't think I even would've noticed that one --because it seems natural to me to stand in the rain with my arms out, looking at the sky and laughing <img src="i/expressions/face-icon-small-wink.gif" border="0"> -- but Mike pointed it out to me. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

To Emily and Emily's MomI have been reading some of what you two have been writing.You are both amazing.You have come so far and are so up beat.I have a very good friend who has an 8yr old daughter w/CF,I would like to learn more about CF.How can I educate myself about CF soI could maybe be of help to her?

 

[NoDayButToday]

<blockquote>Quote<br><hr>Most people take life for granted thinking that there's always tomorrow. Not only is that not true for us...it's not true for ANYONE.<hr></blockquote>Exactly how I feel. No one knows what tomorrow will bring, so why put living as you want to off another second? I think that having CF gives a person a certain degree of spotaneity (sp?) and an ability to find happiness in the littlest things that everyone should have. Because CF gives CFers such a sense of uncertainity about what their healthy will be like in 5 years, or a year, or even 6 months, they want to live in the now. That's why my username is NoDayButToday--- and also that I am a HUGE rent fan <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EmilysMom]

To the poster who asked about how to educate herself......Everyone should have friends like you....Read whatever you can find....ask whatever questions you want to here......CF people and their families are always willing to answer questions....EMily is a good example. As a child, she would much rather have had people ask questions than to have had parents stare, shush their children and walk away. She was always willing to answer a question and would rather do that than be stared at because she is doing IV meds or having a coughing spell or whatever. Feel free to ask questions...One of my big CF "missions" (if you will) is public awareness. So many people don't know what CF is (I still have people say to me "Oh, that's gone now right. Emily's better?") We were stupid when EMily was born. Her dad and I just looked at each other and went "What is Cystic Fibrosis?" so one of my big things is that as many people as I know learn about CF and organ donation and anything else I can teach them.As far as living each day to the fullest....One CF mom I knew years ago described it in a unique way to me that I have never forgotten.Anyone can get hit by a train, but with CF , you are already standing on the tracks and the train is coming...you just don't know how fast it's traveling.<img src="i/expressions/rose.gif" border="0">