Our Community is Family
By Kristy Moser
For us, the Loeys-Dietz Syndrome Conference is a home coming. We belong. We are family. We know that no matter what we are welcomed. This conference in June will be our third. Our first conference was in 2012 when my son, Wyatt, was 11 months old. That conference was the first time I saw someone who looked like my son, it was the first time I could talk to a mom, face to face, who knew what I was going through. This was the best part of the conference. For us, we had felt so alone. We live in a suburb of Cincinnati and knew no one else in our area with LDS. We had connected with people over Facebook (thank God for Facebook!) but had never come face to face with people who was dealing with the same things that we were dealing with. It was emotional, it was real, and it was great!
Wyatt was able to be examined by Dr. Dietz and we had his diagnosis confirmed. I was able to video the entire appointment, as my husband was unable to come to the conference with us. We were able to get to know other families, what we had in common and how we could support each other.
The next conference, two years later, was even better! There were more families, more information to gather and more time to connect with one another. The boat ride in the inner harbor was so fun! It’s refreshing to be able to have fun together. So often we are praying for one another, supporting one another through the tough time, it’s nice to have good times and create good, fun memories together. I think, for me, the best time is the time when I can hang out with women, both moms and those who have LDS, “after hours” and we can have a drink, share things, laugh and cry together. Those are the moments that are real and those are the moments I crave when things are crazy.
For us, conference isn’t just about medical stuff, though that is a huge part of it, it is more about connecting with others who can completely understand. It’s good to know you are not alone. It’s good to know you have a family surrounding you.