The Rite of Passage I Didn't Expect as Someone Who Grew Up With a Disability

Do you remember the first time you voted? When you got your license? We all have those moments in life that are memorable rites of passage. Some signal a unique time in your life when new responsibilities and decisions present themselves. Those moments can define you and the course of your life going forward. As a person with a congenital disability, I had a particularly unique rite of passage waiting for me as I got older that I did not really anticipate.

I always knew I had a disability. I’m the youngest in a large family, with all my siblings being non-disabled. I was only briefly in special education; I was mainstreamed almost from the beginning. Suffice it to say, pretty much no one I knew growing up had a hearing aid, back brace or had as many surgeries or doctor visits as I was experiencing. I saw my siblings or peers go through graduations, important religious ceremonies or get their first job.

I participated in many of the same things, so I looked to them as a sneak peek in what to expect and tried to prepare accordingly. I studied, when I was old enough, I practiced driving, and I obliged my parents in going to religious education classes. I didn’t anticipate that when growing up with a disability, there would be a pivotal moment in my life related to my disability that would define me and my future much like my preparation and selection of a career did.

Since I was 3 I was preparing for not one, but a series of reconstructive facial surgeries to correct hemifacial microsomia due to Goldenhar syndrome.  My mom had been by my side encouraging me all those years in anticipation that these surgeries would help me eat, speak and breathe better and end the stares and rejection I had grown up with. I was very aware of what these surgeries meant to her. I knew she was going to be there for me no matter how many surgeries it took. These surgeries finally started when I was 14. At that age I was very aware of what they involved and the routines of preparation, surgery and recovery.

The four surgeries were spaced out over my four years of high school, so while I was looking forward to and anticipating my future college plans, I was also preoccupied with my present round of surgeries. On my 18th birthday, a little less than two months before my high school graduation, my mom and I waited in my doctor’s office to schedule my last surgery before college that summer. This was already going to be an emotional visit. For the past 10 years after we had moved from my home town, my mom and I had traveled 400 miles multiple times a year to see this particular doctor instead of searching for a local doctor because we trusted her expertise and appreciated her humanity. I knew my mom was planning for this to be the last time we saw her. She intended to get a recommendation from my doctor for the remaining, more minor surgeries and treatments she anticipated in the future.

We spoke as we waited — not of this, but of my birthday, impending graduation and moving out to college. Seemingly without thought I declared, “Mom, this is going to be the last surgery you plan. I will do this surgery. After this though, I really don’t want to do anything else unless absolutely necessary. I want to go to college and not have to think about doctor visits and hospital stays.” I was so matter of fact, I think I stunned not only myself but also my mom. Still, as we went on with the doctor visit, we listened as my doctor recommended future procedures, with wisdom tooth removal and braces being the least of them. My decision, however spur of the moment, still felt right.

I was true to my word. Almost 30 years later, I have only had two procedures done, in contrast to the 20 or so I had up to age 18. I had a wisdom tooth removed when it was necessary. I also had a shunt revision for my hydrocephalus, which was vitally necessary. Don’t get me wrong — on occasion I will do my research or ask to see a maxillofacial surgeon to see if there is any new surgery or treatment that is worth my while. So far however, weighing the choices of living my life as it is and interrupting it with the promises of new round of surgeries or treatments that may or may not change or improve my life as I know it, I choose to live my life as is.

That choice may not be the best choice for everyone, and one day I may change my mind and alter the course of my life again with surgery. However, that moment in the doctor’s office the day I turned 18 was my rite of passage. It was the day I chose to control how to live my life with my disability based on my values and not anyone else’s.