We attended the Rolex 24 in Daytona Beach for the weekend. The whole experience was amazing!! Julia's name was on car #14 along with bunches of other NF hero's. It was a wonderful family experience. All the NF families we have been meeting at events all over the country were there. Our kids just "click" right together now. It's really important to the our children that they know other families dealing with the same issues as us. We think it's been really helpful to our kids- they don't feel as though we are the only ones dealing with NF issues.
One of the funniest things that happened there is that AJ though he had met another NF sibling before. He said " Mom we went through all the fundraisers but no- we never met!" I thought it was so funny that AJ understood which activities we did were NF related and which weren't.
It was fun for all of us as parents to catch up while our kids played. We got to catch up about our kids behavior, medical issues and exchange information on whats helped our children deal with all these issues. Its truly priceless- so many of us go through similar things- it was so nice to feel like part of a group, feel connected to other moms in ways I don't connect with moms that don't have NF children. The endless waves of stress and anxiety and clouds of worry I battle are shared by these moms- thank God for them. Isolation is a terrible feeling.
It was worth the travel time, the exhaustion of traveling with 4 kids, the getting in late and working the next day. It was just amazing to be a part of something so much bigger than yourself :)