I was born with a hole in my back about the size of your palm. Except for a dime-sized hole where my nerves were exposed, it was covered by a clear membrane. The hole was the result of spina bifida, a birth defect where the spine doesn’t form properly.
My mom learned I had spina bifida about 17 weeks into her pregnancy via blood test. What my parents didn’t know until I was born was how severe the defect would be. After I was born they found out I had the rarest kind, and the second to worst in terms of complications—the first doctor my parents saw before I was born said I would not be able to walk or use my bowels in a normal way.
That doctor was not wrong in his assessment, but he didn’t take into consideration my potential. He didn’t think about the effort my parents would make to get me the treatments I needed (17 surgeries and countless doctors visits) and my perseverance.
I have been lucky, too, experiencing what I have felt like were miracles.
The first miracle was walking independently.
I realized that miracle when I was 4 years old. At age 2, I began to use a walker. I got stronger at age 3 and moved to walking with crutches. After about a year, my mom saw I had dropped one crutch. My parents were elated because there was a very good chance I would be using a wheelchair for the rest of my life.
A couple months later my parents threw a party to celebrate my ability to walk independently. More than 150 people came. We had the street blocked off and there were horse rides, a DJ and bouncy houses. A fire truck came to play with all the kids and spray water on them. All the neighbors chipped in to help with food as well. It was the day I took my first public steps, too.
The second miracle was getting a treatment to help me gain greater function in my bladder and bowels.
I got the treatment, called a bladder stimulation treatment, at Children’s Memorial Hospital, now called Ann & Robert H. Lurie Children’s Hospital, in Chicago when I was 5 years old. In total, the treatment took seven weeks over three trips to Chicago from my home in Olathe, Kansas. We stayed at the Ronald McDonald house (which was five minutes from the hospital). My parents and I would go to the hospital every day of the week for two hours at a time.
While I watched a movie, they hooked me up with a battery pack attached to a catheter sending electrical impulses to my bladder while filling my bladder with saline to see if they could fire my muscles and get some feeling there.
It worked in a big way as, a few weeks later while the treatment was still ongoing, I felt the sensation that I had to go to the bathroom for the first time in my life.
The third “miracle” was not so much a miracle as it was a testament to my perseverance.
Friends are one of the most important influences in the life of a child with disabilities. They will determine what path a child with a disability will go down and how they will view themselves and other people moving forward.
I have been fortunate enough to have many supportive family members, friends and teachers throughout my life. People who looked at all the things that I could do rather than what I could not do, which helped spur a belief in myself that has carried me through the best of times and the roughest of times.
But not everyone was kind, and my self confidence was finally put to the test when I was bullied for the first time.
I had just started middle school in a new school where I didn’t know anyone. I was trying to put myself out there and meet people. But one guy decided he needed to start picking on me. It started out as just a rude comment here or there while I was talking to another friend at his locker, and then it escalated to him getting in my face and shouting at me. Then one day as I was leaving school, he knocked the books I was carrying out of my hands.
When I got home after my parents had picked me up, I told my parents I didn’t want to be at school anymore. My parents didn’t want to take me out of school, but told me they would make sure the bullying didn’t get out of control.
A few days later I was cutting through the library to get to class and I saw him. I accidentally made a motion (my motor control is not always the best) like I wanted to punch him and he got in my face. One of my teachers saw what happened and told us both we could be suspended if it happened again.
Later that day, the teacher pulled me aside. After talking about the situation that day, he told me he had been aware I was being bullied. The teacher said he threatened both me and the other kid with suspension because he didn’t want it to appear he was defending me. That was not the time or place to call the kid out because he needed confirmation from me about the things he had been hearing.
After school that afternoon, I was at our middle school’s basketball game and the kid texted me and apologized for everything he had done. I forgave him saying it was OK and moved on from it. Things got a lot better after that. The experience taught me that my self worth is not found in how people see me from the outside, but who I know I am on the inside.
Now I’m about to graduate from college, and I could not be more grateful for the experiences that got me here, even the challenging ones, because they shaped who I am and helped me to seize opportunities, like announcing men’s and women’s college basketball games on the radio and being a leader in my campus ministry.
That first doctor said I wouldn’t be able to succeed. But the second doctor my parents saw said what mattered most, that I would only go as far as I and my parents let me. I am forever grateful my parents believed that with all of their heart.