From Chapter 17: Growing Up with Spina Bifida, by Jessica Newbauer

I was born on September 7, 1978 in Cincinnati, Ohio. I was born with spina bifida, and as a result, I have very little feeling and no movement below my knees. I also have a shunt in the ventricles of my brain that reroutes the excess fluid. I am the youngest of four children and the only girl. My brothers would probably all tell you that I got lots of attention since I was the baby of the family, the only girl, and had special needs.

Childhood

When I was growing up, my parents tried to give me a normal childhood, but at times that was difficult, since I was in and out of the hospital a lot. When I wasn't in the hospital, I spent a lot of time watching my brother's sporting events or going to our local YMCA for swimming lessons. My best friend was Josie. She and I have been friends for almost twenty years now, and we have shared a lot of secrets and good times together. I don't know what I would have done without her listening ear when life sometimes seemed unfair and I just had to express my frustrations. It can be kind of difficult to fit in when you have to catheterize yourself several times a day and follow a bowel management program to achieve continence, but my differences never bothered Josie.

School and homework and good grades did not come easy for me. It always seemed like the other kids caught on to everything more quickly. I had tutors on and off throughout school, but I managed to graduate from high school on time, with my peers.

Although school was hard for me, there were high points in my life even at a young age. In fact, one of the best experiences of my life occurred while I was in grade school. Right after I started kindergarten, my mom registered me in a contest to be the poster child for the March of Dimes for Hamilton/Clermont counties in Ohio. I was chosen from the many children who entered the contest, which made it possible for me to participate in a lot of fun things. I was on TV commercials, I got to meet a lot of different local celebrities, and I attended all kinds of fundraising events. I held the honor of being the March of Dimes poster child for three years. Along with the March of Dimes activities, I was a Girl Scout from elementary school through my senior year of high school.

After graduating from high school, I attended Cincinnati State Technical and Community College. I graduated with an Associate degree in Liberal Arts after five years of classes. My parents and I were so proud that I had persevered and achieved a worthwhile goal--obtaining a college degree!

Surgeries

Even though I had a lot of great experiences during my childhood, I also had a lot of difficult times as well, mostly because of the number of surgeries I needed and the amount of time I spent recovering in the hospital and at home. Although most of my surgeries were simple, such as the operations to straighten my legs to help me walk better, some were more serious, such as the shunt revision I needed in 1998. When the doctor started to remove the shunt, I started bleeding in my brain. I ended up staying in the hospital for three weeks and had to go through three emergency surgeries. This was by far the worst period in my life. During that complicated recovery, I lost lot of strength and was no longer able to use my crutches and spend time walking. I had to switch to using my wheelchair exclusively for mobility. Although using a wheelchair made it possible for me to get around quicker, it was still a loss and I missed walking.

Dating/Marriage

The dating scene was completely different for me than for most people I know. I didn't meet the love of my life, Shaun, until I was eighteen years old. We met on the Internet through AOL's pen-pal ads. We were friends for a year before we started dating, and we dated for four years before we were engaged. Our wedding on June 18, 2005 was exciting, to say the least, and the most memorable day of my life.

One of the most amazing things was that, after seven years of not walking, I walked down the aisle to meet my groom! I had made up my mind that I wanted to walk, not use my wheelchair, and nothing was going to stop me. Shortly after Shaun proposed to me, I started physical therapy and for six months I worked very hard. Only a few people knew of my plans. I wanted to surprise everyone, including my father. Boy, was he amazed when I took his arm, at the rehearsal and walked down the aisle. It had been so long since my parents had seen me walk they both broke down and cried. The next day at the wedding ceremony, most of the guests also shed a few tears as they witnessed the proud father escorting his little girl down the aisle. I am not sure who was holding up whom at this point, but we made it to the altar. It was a perfect day and one I will, of course, remember for a lifetime.

Shaun and I lived with my mother both while we were dating and also for a little while after we got married. After we had been married a year, we started looking at houses. It took us quite a while to find a house that would be accessible for me, but eventually we did find one. In October of 2006 we moved into our own house. I had never been on my own before, so this was a new and exciting experience for me.

Conclusion

All in all, I'm very happy with how my life has gone. At present, I am twenty-eight years old, and have a great job as a customer service representative. When I was young, I never dreamed that I would get married and be living on my own before I was thirty. I feel fortunate to have had all the great experiences I have had throughout my life.