What can I say about the meeting and the experience?? For me it was a fantastic experience. The ride from the airport was beautiful. The buildings in the area just amazed me. When I checked in I had a wonderful gift of local "snacks" to enjoy. Paul Mazur, a project coordinator, thought it was be wonderful to get get some local goodies for us all to enjoy. What a wonderful way to start off this group with goodies and a sweet note welcoming me! I do have to say I ate almost all the chocolate items and brought everything else home. Issac and Brianna tried the Salty Oats Oatmeal Raising cookies from kayak cookies and Brianna is now insisting that we need to order some :) Emily Glanton was huge in making these last few days go smoothly for us as well. I'm not sure that anyone could have taken better care of us than these guys.
The meeting had us meeting SO MANY NEW FACES! Our genetics counselor was there, a site coordinator from Vanderbilt, several doctors and many, many people that are just part of the UDN, Undiagnosed Disease Network, program. These are a few of the people that we got to spend time with. Isaac & Alexa
Isaac & Ingrid
Ingrid and Alexa were with us the entire meeting and they were so truly excited to hear our thoughts and find out how to reach out to new families. I've never participated in anything like this before, so I wasn't sure what I could do. Ingrid asked us what could we each contribute to the group. In my head I was thinking I don't know! What can I contribute?? There were so many things that people had in common and yet such wide spread differences as well. One of the dads has created a wonderful resource to help other parents in dealing with insurance companies, fire, police, etc. I think what he has created can and will help SO many other parents in similar situations! One thing that I didn't quite expect to feel was how different our situation is to most others. I have a dear friend that has several children that are medically fragile. I've heard all that she deals with, but yet that's not our daily life. Most of the parents I met deal with very similar situations on a daily basis. It was really hard for me to relate and made me wonder if I was right for the group! I honestly had not thought about that part of this journey! What is rare? What does it really mean?