By Lindsey James My first year of motherhood was filled with many exciting “firsts”- Keegan’s first smile, the first time he rolled over, first foods, first words, first steps and so on. I embraced every milestone with great enthusiasm and anxiously awaited the next. Despite numerous health and feeding issues due to aspiration (choking on…
Four Days of Normalcy
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…
I Want to Keep My HED
By Lindsey James I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could. My pregnancy was pretty uneventful and my labor experience was a dream. Everything…
Ectodermal Dysplasias and Relationships
A few weeks ago, I offered to write a post about dating. At the time, I had just written the post about ectodermal dysplasias in the workplace and I was thinking that dating would be another good topic to explore. The truth is, it’s actually kind of hard to determine how much ectodermal dysplasias is to blame…
Ectodermal Dysplasias in the Workplace
Choosing a Career Path with Ectodermal Dysplasias in Mind I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions…
A Gratifying Homecoming
Wow! What a great Family Conference! If you attended, what was your favorite part? Mine was spending time with all of you, the families. It was gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories. The conference was full of good times, with lots of laughter,…
Homecoming
If you’ve ever been away from home and your loved ones for a while, you know how good it feels to return. Whether it’s been a month or a year, the sense of familiarity remains and it feels like no time has passed at all. Attending the annual NFED Family Conference is like that. Even if it’s…
94 Years and Going Strong
I just called a friend to wish him a happy birthday. With a chuckle, he greeted me with the question, “How did you know I was still alive?!” I told him that with a spirit as big as his, I just knew he was alive and doing well. And he is. That’s our Joe Barone….