By Aubrey Williams
I was born into the CHARGE syndrome world on October 19, 1998 in Kansas City, Missouri. I was born with breathing complications, inability to swallow, and profound deafness in one ear. I wasn’t expected to live long because I was fighting so hard to breathe. In fact, it was my father who led doctors to the CHARGE Syndrome diagnosis. Doctors weren’t sure if I would ever be able to walk or talk, I had a trach until I was 3 ½, and my future regarding school was unknown. 18 years and 23 surgeries later, I’m sitting at my computer while looking at my desk covered with papers about the college I’m attending in the fall, a scholarship essay waiting to be submitted, and dozens of high school graduation cards from an incredible group of family and friends I’m privileged to know. That’s a good mess, right? Furthermore, I’m sitting at my positively messy desk with just a hearing aid and a g-tube as the only reminders of the first few years of my life.
Growing up came with challenges. When I was little, having CHARGE wasn’t something I liked to talk about or even understood. All I knew was I felt soooo different from the other kids my age. When they were eating in the cafeteria, I was in the health room doing a tube feeding. When they were playing at recess, I would be talking to the recess aides. When it was time for PE class, I would sometimes have to sit to the side because I couldn’t run as fast as the other kids or I was afraid I would get hurt. It wasn’t all lonely though; my gym teachers in my elementary years were my dad’s cousins: Deb and Rhonda. They looked out for me and let me sit and talk with them if I couldn’t do something other kids could.
Despite my close relationships with my teachers, I struggled to talk to my classmates, worried about how they would treat me since I was different. When I was in 3rd grade, the school counselor came to talk to me. She was dedicated to helping kids embrace each other’s differences and get to know each other better, and she wanted to help me share my story with my classmates. I was terrified at first — telling people I had a syndrome and I got my food through a tube in my stomach? No thanks! She was patient with me though. She would bring a few students to her office and have me bring some pictures and tell them about myself. I was uncomfortable at first but eventually became more confident to answer questions. I can’t remember much about those talks, but I know if she hadn’t encouraged me to share, I wouldn’t have the confidence to write this article or to become involved in the CHARGE community. She gave me the boost of confidence I needed 10 years ago to build the friendships I have today.
While I was tackling the challenge of school, my parents were getting involved with the CHARGE Syndrome Foundation, an organization created to help make the lives of families and individuals with CHARGE better. One of the Foundation’s major activities is their International Conference every 2 years where families and researchers can come together. With few CHARGE families in our area, I thought for a long time that I was alone in the world. But that all changed at the 2013 Scottsdale Arizona Conference. I met amazing people, and I learned about the Foundation’s Facebook group for CHARGE families, one more way for us to get to know each other. I created an account when I got home and started talking to some of the CHARGE families I met at the conference. Being able to feel like I belonged somewhere was such a relief after feeling alone for so long. Don’t get me wrong: I love my family, but having people you can relate to is a blessing and I encourage anyone with CHARGE reading this to join us — we would love to get to know you!
After the conference, I started high school. I was more comfortable talking to people about myself and my challenges; but I still needed a push to get where I am now, and that came in November 2013. I enrolled in the broadcasting program at my high school, and our teacher assigned a Public Service Announcement project. My mom suggested CHARGE as my topic. With a little research and help from my teacher in the planning and editing process, I got it done! Turning it in was the easy part; the hard part was when the whole class got to watch them. I was nervous because I was basically announcing to my peers that I had CHARGE. I stared at the screen as it played, a little scared to see my classmates’ faces. Their reaction, however, was a lot more positive than I expected. I was impressed with how supportive people were; it was the last thing I expected from other students. That day, the wall I had built to hide myself from my peers finally started to crumble. I would again be surprised in March 2014, when a feature story that was done about me and my experience with CHARGE was shown to the whole school on our school show, and the response was more positive than I thought. I feel like I grew a lot that year because of that class and the people in it. The PSA project would lead me to not only want to spread awareness more but also help raise money for the Foundation. I got to know Cindy Archuleta and her family through my desire to learn about fundraising; she gave me tips on getting started. I helped to promote her Virtual Walk/Run fundraiser. Then I learned about CHARGE it for CHARGE and started my own donation page. By the end of 2014, my page had raised $2,300 to help others with CHARGE! I was amazed at how many people helped and am so glad to have such a great group of family and friends.
I was given another opportunity to teach my classmates about my life with CHARGE syndrome the next school year. Our English teacher assigned us a speech about a 5-year goal we wanted to accomplish. I chose my goal of learning to eat and drink by mouth to get my g-tube out. The speech required props, so I brought a plastic spoon, a syringe, and a bottle of the formula I use for my g-tube. I began by asking the class to think about their favorite food and to “imagine only being able to eat that one thing for 16 years while watching everyone around you eat other really yummy stuff…” (Williams.). After I explained my goal, I took my syringe, which I compared to using the same spoon they used as a baby all their life and said, “let’s throw that baby spoon away don’t you think?” (Williams.). Then I tossed the syringe across the floor. We all laughed and I felt like they were interested in what I was saying. I didn’t get the vibe that they thought I was weird as I had feared.
Shortly after that project, I was asked to give a speech at the CHARGE conference in July. That was a MUCH larger crowd than English class, but the project was good practice and at least at the conference, I was talking to people who already understood CHARGE. I explained the things I had done to get involved with the Foundation, fundraising, and my passion for raising awareness and helping other CHARGE families like my own. 1,300 people were listening to me. I told my dad later that to keep from getting nervous, I tried to focus on just a few people (not the whole crowd) each time I looked up, then it was not so overwhelming. It was a great experience and I’m glad I could do it!
In April of 2016, I was asked to represent the CHARGE Syndrome Foundation at the Council for Exceptional Children convention in St. Louis, hosted by the Division on Visual Impairments and Deafblindness. Attendees were educators who work with students in the Deafblind community. Originally, I thought I would be setting up a table and handing out Foundation brochures. When I arrived, I was asked to give a short speech. I wasn’t prepared! I was a little nervous about being able to think of what to say on the spot with no practice. I went to the front of the room and explained a little about CHARGE Syndrome and what the Foundation does to help. Someone asked me if I had any advice about interacting with students with CHARGE. I stressed that no two people with CHARGE are exactly the same. We differ in our abilities, and I believe getting to know each person as an individual is very important.
The rest of 2016 brought a couple of other big opportunities for me to be involved in the CHARGE community. In July, I visited the Lobaugh family in Oklahoma with another young adult with CHARGE: Philip Wismer. We became good friends online and decided to plan a get together. Ingrid called it Camp CHARGE. It was a week filled with laughter and fun. Ingrid also arranged for a meet and greet with other Oklahoma CHARGE families and professionals. We had a good exchange of ideas and resources and were fortunate to have Deaf Interpreters courtesy of TSHA, the local Deaf and Hard of Hearing Agency.
At home, I decided to plan a gathering for CHARGE families in my area. We met at a local pumpkin patch in October. Six families came including my own. It was nice to meet people with CHARGE who live close by. We had fun getting to know each other, taki
ng a hayride, and exploring the patch. I enjoyed that experience and hope to do something like that again.
Despite the challenges I’ve faced, I found my calling through the CHARGE community: teaching and advocating for others like me. Yes, if I hadn’t been born with CHARGE syndrome, I wouldn’t need a g-tube or a hearing aid. I wouldn’t have balance issues and I wouldn’t have had 23 surgeries starting at birth. But if I hadn’t become part of the CHARGE world, I wouldn’t have been able to reach out to so many people, and I wouldn’t have the amazing friendships I have now. I wouldn’t know the hundreds of people I now consider my family. The bonds in the CHARGE family are some of the strongest I know, and though I wish I had it easier sometimes, I wouldn’t trade this extra family I’ve been given for the world. If you’re feeling alone like I was, don’t worry: there’s a calling out there for you too! You may even find it on the computer while sitting at a messy desk.
Work Cited
Williams, A., 2015, “Five Year Plan Speech”, Lee’s Summit West High School
