Letter to My Daughter – April, 27 2010

The Lessons of Blogging

I started this blog for you – I think. It’s not quite what I thought it would be. But that’s not a bad thing.

I had good intentions. However, now it travels in its own direction.  And frankly, I’m not sure what direction that is.

Like a kite ripped from my hands by the wind, it floats away in an unpredictable course – high up there in the blue, its shape almost unrecognizable now.

But I’m enjoying the ride. And learning a lot. Mostly, how strong other people with cystic fibrosis are and how weak I’ve been at times. Perhaps, I always knew this. However, when I coughed up blood last week, I was a little less stressed about it thanks to my new friends.

I don’t know how much longer I’ll keep this up. The realities of CF always seem to overcome me and I go back into hiding and come out with a new identity. We’ll see. It’s strange how you can care about people you’ve never met, but frustrating that you can’t do more to help them.

Be well. Take care of your mother.

Love you both.


6 thoughts on “Letter to My Daughter – April, 27 2010

  1. Touching post. I can relate completely, as my blog is in a way for me to vent and share, and in a way for my son.

    We all have our weak and strong moments. I agree that meeting complete strangers has formed relationships… We share a story. We can support each other.

    • Thank you. I feel that I’m always one day away from some type of infection that could do me in. 47 in CF years is 80 normal human years. I’m in the danger zone. I’d like to leave something on record for my daughter to read later. However, at times recently, this blog has a been a great stress buster. It will be what it will be and she’ll see it all.

  2. I totally relate! I’ll be 43 this year…
    We’ll support each other through it all 😉
    It’s so nice to finally connect with a CFer. I’m new to blogging and have never really had any CF friends.
    I’m finding more friends and enjoying this escape to cyber world 🙂

    • I know; we’re close in age. I have to tell you. I wish I was growing up now with CF rather than the 60s. The Internet makes such a big difference. I don’t think I could ever completely explain “then” versus now. What a world of difference. Interesting, but saw CNN article on the CFer who passed and who shared her decline on the Internet. Her mother couldn’t understand her need to go public with private issues. I get that. Take Ronnie Sharpe. He has done an amazing job sharing his life on the Internet. It comes naturally to this younger generation. They’re so comfortable with showing videos and sharing their videos. When I grew, CF was something you hid. It was like being a leper but with the scars inside.

  3. I can’t completely relate as I wasn’t diagnosed until I was 24. But I do understand. I hid it when I was diagnosed – it took me a few years to “come out”. I don’t know of Ronnie Sharpe – i’ll google him. Eva’s story was amazing – I found it a couple of weeks before she passed – but I was obsessed with the site!

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