Moebius Voices

1. Sophie: How are you affected by Moebius Syndrome?

Chris: Moebius impacts my life in many ways, but does not dictate or control my life. The most common things that impact my day to day life are having a smaller left hand and not having peripheral vision. However, I've learned to adapt to live a very normal life day to day. In all honesty, Moebius has probably helped me in just as many ways has it negatively impacted me... It's taught me to be more independent, resilient, adaptable, and resourceful.

2. Sophie: When were you diagnosed, and what was known about Moebius at the time?

Chris: When I was born, nobody really knew what was wrong. My parents did a lot of research, I saw a lot of doctors, and nobody could figure it out. It wasn't until I saw an eye doctor after a month or so that he mentioned it to my parents. After doing some research in the medical library nearby, my parents learned much more about it and the symptoms, etc. all fit to what Moebius was. At that time, not much information was readily available about Moebius and most of it was not particularity positive. Furthermore, many doctors had never really heard of it, so oftentimes seeing a doctor was as much an education for them as it was for my parents.

3. Sophie: When did you first really understand what Moebius was?

Chris: As a kid, I don't think you really ever fully understand what's going on. You just think you're normal, but a little different. It wasn't until I got into preschool and grade school that I started getting a lot of questions or comments, especially about my hand, voice, or lack of ability to smile. That time period is probably the first time I started to understand what Moebius was and how it was impacting my life.

4. Sophie: What was it like for you growing up with a facial difference?

Chris: It was challenging in some ways, but not super limiting. The biggest issue I ran into was being misunderstood. People thought I was sad instead of happy because I couldn't smile. Once I was fortunate enough to get the "smile surgery" by Dr. Zucker, it changed my life a lot. The ability to smile and have some more facial movements was crucial to being understood socially a bit better. Of course, just like anyone with facial differences, I got a lot of stares which make you feel self-conscious about yourself. I believe that's why I surrounded myself with a lot of great friends and family who knew me so well and didn't care about any of the superficial differences Moebius can present. Also, it's why I dove head first into sports, because in sports the only thing that matters is what you do on the field, not how you look, sound, etc.

5. Sophie: What would you say is your best feature - what do you like about yourself?

Chris: Not to be self-serving... But I'd say I like a few things about myself, all of which I credit Moebius for. I think I'm fairly witty/funny (some people would say it's a bit too sarcastic!). I also think I'm a determined and motivated person. I work hard and pride myself in not letting anything stop me from hopefully achieving what I want to achieve.

6. Sophie: What was it like finding the Moebius community and getting involved?

Chris: I grew up with the Moebius community. My mom went to the very first Moebius Conference, and I went to every single one for a very long time. My family has been heavily involved in the community over the 30+ years the Foundation has existed. Growing up, some of my favorite memories, trips, and moments were at Moebius Conferences hanging out with so many friends.

7. Sophie: What is life like for you now as an adult?

Chris: I live a very normal life as an adult! I recently purchased a condo and am fully independent. I love my job and where I live. I have great friends and family who lovingly support me in so many ways. I'd say I live a totally equivalent life to a person of my age with no disabilities or differences.

8. Sophie: How long have you been coaching soccer and what does it mean to you?

Chris: For those that know me and those who have been in the Moebius community for many years, they know I was attached at the foot with a soccer ball growing up. So, after a couple of years of working in "the real world" after college I figured out that coaching was what I wanted to try to do. I went to grad school and was a Graduate Assistant at Providence College while working as a club coach as well, then I moved onto the New England Revolution in MLS as a video analyst for a number of years, and now I'm currently in my fourth season an Assistant Coach for The College of the Holy Cross Women's Soccer.

Coaching is so rewarding in so many ways. It's something I absolutely love to do. I love showing all the players I coach all the things I love about soccer and about being a part of a team. Soccer is just the vehicle for life lessons that last way after they've kicked their last soccer ball. I'd say that while it's a "job", I don't feel like I go to "work" most days.

9. Sophie: What would you say to parents whose children are being diagnosed with Moebius Syndrome today?

Chris: I think my parents would have wiser words to offer than me, but I think I'd say what I usually say... Treat your kid like any other kid. They want to be treated like their friends and have that 'normal' feeling. Obviously, you need to take into account their needs and what that looks like specifically, but let them try to do things on their own and figure out their "how". Other than that, just love them and support them! I'm sure it can be hard at times as a parent with a Moebius child, but know that there are lots of "ups" on the way to your child becoming an adult, not just the "downs" you can experience in the early years through doctors' visits, etc.