Water. How I have always loved water. Whether it be in a bath tub or a swimming pool, I want to be in it.
Swimming allowed me to be weightless and graceful, while on land I was clumsy and awkward. Being in the pool was like being in another world – one where I never got too hot, and when I felt tired I could just float along and listen to the gentle waves lapping against the edges.
When I was a young lass of 3 years old, my mother decided it would be wise for this little fish to take swimming lessons. She signed me up for a a program of gymnastics, crafts and swimming at the local YMCA. She also thought it would be a good opportunity for me to make friends and prepare me for kindergarten.
On the first day of swimming class, my mother helped me change in the locker room. Neither one of us had any idea that we were about to meet someone special. I walked out into the warm, humid pool area and lined up with the other children by the edge of the pool. My mom sat in an observation area with the other mothers as the instructor introduced herself. Her name was Suzanne.
Suzanne had hands and feet like mine.
The significance of this was lost on me at the time. I wasn’t aware how rare my condition was or how unusual it was to run into another person with EEC. I just thought it was neat that this woman looked like me! My mother, however, was overcome with emotion. She had never met anyone else with EEC and here, just by chance, was Suzanne.
Long after my swimming lessons were over, my mom kept in touch with Suzanne. She must have asked her so many questions and Suzanne patiently answered them. As I grew up, Suzanne was always referenced whenever I had surgery or a health situation to deal with. “Suzanne went through this”, my mom would say. “Suzanne said…” my mom would start off, when I wondered about how something was going to go. Over the years we lost touch with Suzanne, and her presence fell to the back of my mind.
It wasn’t until I got involved with the NFED that I started thinking of her again. During the planning stages of the 2012 family conference, I was given a list of people who were registered for that year. Scanning the list, I saw Suzanne’s name and address. I wondered if it was really her. I couldn’t even remember what she looked like.
Sure enough, she and her kids were at the conference. The first day in the EEC syndrome specific group, we sat in a circle and introduced ourselves. I knew who she was even before she said her name. After the session ended, I caught up with her in the hall. “Suzanne! Do you remember me?” I asked.
Of course she remembered me. As I’ve come to find out, meeting others with EEC is not something anyone easily forgets. I’ve also realized just how lucky I was to have met Suzanne when I was little. Before the internet, there was no easy way to find others with EEC. Meeting her and knowing that she had been down the path ahead of me was a great source of strength and encouragement for me. I’ve met adults who didn’t know there were others with their condition until they were in their 40’s and 50’s! It must be a lonely feeling to spend most of your life thinking you’re the only one.
I also got to meet Suzanne’s son at the conference. Isn’t he cute?
I’m not really sure how to conclude this post except to say that I thank my lucky stars that I had Suzanne to look up to while I was growing up. I hope I can be the same for other little girls and boys out there with EEC. While sometimes my “EEC issues” can get old, I wouldn’t trade it for the world. I’ve met so many amazing people because of it. I am continually inspired and encouraged by the strength and positive attitudes of my EEC friends and the people that love them.