2011 GFPD Family & Scientific Conference

I'm sorry this has taken me so long to post about the conference its been almost a week since the conference... I've sat down at this computer several times in the last week to write and found that words didn't come. There are so many thoughts and feelings that I just cannot seem to put into words. It was such a wonderful experience. Maybe this will help this is the opening video from the conference. These are face of the amazing children who like my Little Landen suffer from this disorder.

What an amazing opportunity this was for us! Look at those beautiful faces! They are the reason for this whole experience. I'm having a hard time putting into words what this experience was for us. It was more then just fun, it was more then just informative, it was so much more... Sometimes its hard not to feel alone in this struggle... I have my husband, family and friends who support and love me but still its me here every day dealing with this awful disease. But to share a few days with others who like me have amazing children with this awful disease it was very special. The GFPD is a wonderful organization (please visit http://www.thegfpd.org/). Less then a year old they were able to put this event together with the help of some wonderful people.

We left Arizona at 6:30 Saturday morning to head to the Las Vegas airport. Literally from the moment we walked into the hotel we were surrounded by family... Our PBD family. The Burdick's who we already know from Flagstaff were there as well it was so nice to see them and share this experience with them too. We meet up with many family's that night at dinner it was hugs and joy right from the beginning. I have to admit that I felt lost for a moment to finally see these people whom I've been talking to online for so long. Most of the time I recognized their children's faces but not theirs. I felt like we should all be wearing our profile pictures so that we would be able to identity one another. It was a shared experience for all of us there was no uneasiness that usually accompanies when a large group of unknowns get together for the first time. We were already family brought together by our shared experience and our children.

Sunday morning Scott and I took the kids to the Omaha Zoo it was fun it was a big zoo with lots of animals. We spent the time looking at animals and riding some rides. We let Brayden get out of the stroller and just run! That boy has so much energy!! He was so cute running all over only pausing to watch and laugh when he saw movement in a cadge. He was so funny so interested in everything. We meet up with our friends and saw some more of the zoo. The conference started that afternoon so we headed back to the hotel.

We learned so much at the conference tons of useful information. We were able to ask questions and get answers from people who actually know what they are dealing with. We learned more about this disease, what should be doing and looking for, nutrition, working with hearing and vision loss, research going on and the science behind everything (most of which was WAY over my head). But I have to say my favorite part was watching Little Landen interacting with every one. Both Brayden and Landen made so many friends! They are both so friendly and everyone was so excited to spend time with them. I think that the boys made more friends then we did.

One of the most touching part of the conference was the tribute they did for all the children who have passed on. There were tributes shared candles lit in memory and this beautiful tribute video.

Tears freely flow every time I watch ether of these videos these children are so beautiful and their families are so amazing. My heart is so full of the people we met there and of course the story that we all share. These children are so amazing so similar in so many ways yet so very unique. To all my PBD family... You are so amazing! I love you and wish that we could all be together more often. Thank you for the experience we look forward to next year. There is so many of you that I wish I had spent time with talking, sharing and getting to know you all much better. I feel like there just wasn't enough time. There are so many of you that I didn't get to say more then a few words to but you still mean so much to me. I follow what I can online and love talking and sharing. You inspire me and bless my life. Thank you for showing so much love to my boys and my family! Next year seems so far away for me.