12 April 2011

Meeting other CF person!

On Saturday, Brian and I attended the CF Patient Education Day at Children's Hospital in Dallas.  It was a very good conference where we had the opportunity to hear CF experts speak and to meet other CF parents. 

Some of those other CF parents we met were Deana and Lydia.  Deana and her husband are parents of 5 children, their youngest son Augusta has CF.  Lydia and her husband have two children who are 10 months apart.  Lydia's oldest Azer has CF.

One of the most exciting parts of meeting these women on Saturday was the fact that we knew of each other online first.  We are all members of a online CF community called CysticLife.  Each of us have used this community to ask questions, learn about CF and meet other families in the battle for their children's lives. 

I knew Lydia's son's CF doctors were at the location of the conference, so I contacted her to see if she was going.  I thought it'd be fun to meet.  So, we did.

But then, before the first session began, Deana (pronounced "Deena") randomly came up to me and said, "uh, are you on CysticLife??"  I said, "yes - are you?"  It was a super-fun moment!  Believe it or not, she had recognized me from my tiny CysticLife profile picture!  Isn't that wild?  As soon as she mentioned her son's name, I recognized her as well!  

I certainly felt less alone at a meeting in which I had honestly expected to know no one (other than Brian, of course).  But meeting Deana and Lydia in person reminded me of the awesome effect the internet has had in our lives...especially our CF life.  Since, due to infection, CFers cannot be within 4 feet of each other and therefore CF children cannot play together, it makes me even more thankful for opportunities such as Skype, blogs, forums and Facebook for coping with Cystic Fibrosis!   Meeting "online friends" can be creepy.  But thankfully these women are nothing but wonderful! 


  1. It was so awesome meeting you too!!! I'll definitely send you the slides if I get them!

  2. SO thankful for our online community too!!!

  3. I'm glad you've got such a great supportive community of Mommies there :-)

  4. Wasn't it awesome to meet each other? So fun!


We love to hear from you! Please leave your comment below!

Note: Only a member of this blog may post a comment.