Back to reality

July 6, 2009 at 9:39 pm 1 comment

I thought I posted this last week but realized I didn’t. Someday I might lose my head if it were not attached!!

Five days with my BFF who has 2 kids with ARPKD and now back to real life. Even though it sucks having kids with ARPKD it is amazing having other moms who can totally get how I am feeling. And spending five days together without more than about 5 minutes of alone time was just what the doctor ordered!!  Not to mention the convention was so informative. And I even spoke at chapter training, which I am so proud of myself for. Julia and I spoke about conversations we have with pregnant moms who just learned about ARPKD and moms who have children who were just diagnosed and moms who had babies die from ARPKD. We talked to other chapter coordinators from around the country to help them understand ARPKD more and to make sure they refer these people to us to support. We had so much positive feedback from our talk and so many people want to learn more about ARPKD. I wish the doctors out there felt the same way. There is still so much misinformation out there.

Next year the convention is going to be in San Diego in August. Hopefully before that time I can meet up with my friends with kids with ARPKD for a girls’ weekend! We need to get together more than one time a year!


Entry filed under: Uncategorized.

The Walk for PKD 12 Years

1 Comment Add your own

  • 1. kidneyeyemomma  |  July 13, 2009 at 10:46 pm

    I know! Five days together was complete bliss! I can’t believe it went by so quickly.

    I am so incredibly lucky you are in my life. So very, very lucky.

    You rock! You are just like Richard!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed

July 2009
« Jun   Aug »

%d bloggers like this: