By Rachel Dahler
Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since.
I can remember when I was younger, printing out countdown charts and crossing off each day that passed. One year, I even made a chart in August for the next year’s Conference. Needless to say I was excited. But why was I so excited for the conference?
Four days of normalcy.
The world is rough out there. People are cruel. They don’t think about their actions, and in turn, the following consequences.
Kids are the worst. Kids are relentless and oblivious to how hurtful they’re being. Overall, the moral of the story is that the public is rude and insensitive.
Growing up, and sadly still, the public is a constant reminder we’re different. We look different, we do things differently and we require special attention. The public just isn’t accepting of anything but “normal.”
Yet for those four days in July, the public gets shut out (for the most part) and we build our own little “fantasy land of normal.” For those four days; there is no staring, there are no rude questions or comments, and best of all, there is no judgment. Everyone is in the same situation and we are all familiar with each other’s differences.
It is our “normal” and it’s absolutely priceless.
Not having been to a Conference more than twice since 2006, and neither of those times having been with my family, this year was extra special. My parents and my little brother, Ryan, came to the conference with me and everything felt just like it had back when I was little. All the same excitement and acceptance was still there.
It was like we never missed a beat. Old friends and new, it was just perfect.
If you and/or your family have never been to a National Family Conference, I urge you to come at least once. I’m only asking for you to give it one chance because I know for a fact – no one can ever just come once. They offer such a sense of community and acceptance.
The conferences are addicting. Whether you’ve never met another person with ectodermal dysplasia in your life, or you’ve met hundreds, we are a family. A community. A support system.
We need you like you need us. Without each and every one of you, we are nothing. I promise you with all my heart, you will not regret being a part of a National Family Conference, a family reunion if you will.Share Your Story