I woke this morning to a couple of emails from friends, letting me know that Quinn’s story had found it’s way to the AOL page via this news source. This story (encompassing the entire journey) has links to the Today Show’s story, as well as links to reporter Julie Wolfe’s story and this blog. They didn’t have a link to the original story from WXIA last Christmas (with the now infamous Santa letter) but I am thrilled for the exposure that Polycystic Kidney Disease is receiving.

So you know, if you are looking for information on PKD please visit the PKD Foundation. The PKD Foundation has been an invaluable resource for our family and for me personally. I’ve become informed about PKD, I’ve become a better advocate for the kids, I’ve not felt so alone, and I’ve met people who have become lifelong friends of mine. Being a volunteer with the Foundation has offered me the chance to learn and grow and to use my energy in a positive way towards fighting the disease that threatens the lives of my children and the delicate balance of our family.

We did the story last Christmas Eve specifically because it would be exposure for PKD and the PKD Foundation. We’re thrilled the story took off and we owe that to local reporter Julie Wolfe’s story telling. She films her her own stories, edits, writes and reports everything you see on the WXIA story. She’s fun to follow on Twitter, too. She’s a runner, and she’s funny. And she saw our daughter’s surgery and took pictures of the good and bad kidney side-by-side. She and I had a moment when she was asking me questions minutes after Quinn’s surgery was done. She was the first person who came out and said that the surgery was successful. She had tears in her eyes. We shared a moment, an understanding, I can’t really explain.

A good place to start on the blog is the About Me page to the right. It is the abbreviated story about where our family has been. In between that are what fill this blog. It’s mostly my wishes for the kids, about how our family survives, how my marriage doesn’t crack under stress, and how my kids – who’ve fought to live – survive in a world of “normal” that other people define.

Welcome to our normal. Sit down and stay a while.