Voices from Our Community: Abby Shares Her Life Experiences With Hydrocephalus!
Hi! My name is Abby. I turned 12 years old at the end of August and this is a snapshot of my life. I was born in Albuquerque, New Mexico. When I was born, I was very sluggish and tired. My parents found out that I had hydrocephalus a few weeks later and at 26 days old I had my first shunt placed. Since I was born 11 years ago I have endured 10 surgeries but only 3 were due to hydrocephalus. Hydrocephalus is only one of the medical challenges I have.
Sometimes I feel like I’m different from everyone else because I have so many medical issues. I want people to understand how I feel burdened with all of the medical symptoms on my shoulders. One of my other medical problems is my blood vessels. On my left arm I have a venous malformation (vein that grows out of control and can fill up with blood clots) that ruptured when I was three years old. I have two more vein malformations on my right hand.
Medical struggles have brought burdens and blessings to my life. Some of the burdens include surgeries, feeling sick, having trouble with my vision, and sometimes feeling stupid because people make cruel comments. It is not fun because sometimes I feel sick when I’m trying to have fun. On the other hand, my medical challenges have also brought me blessings. Some of the blessings are meeting new friends and going to exciting places like that I never would have gone to if I did not have these medical problems. Some of the places include Cleveland, OH, Denver, CO and San Francisco, CA. My family and I travel to different states for the Hydrocephalus Association’s National Conference on Hydrocephalus, like the one we went to this summer in Washington D.C. Another blessing is that I know how others feel with their conditions since I have a condition too.
I have numerous hobbies but my most important interest is drama. I had the opportunity to perform in a play at my church. My character was named Abby, which is my nickname! My most meaningful play was Pinocchio in May of 2012. The characters I played were the pantomiming policeman and the evil clown. I feel so alive when I act and it makes me forget about all of my medical problems.
Even though I have hydrocephalus it does not affect my path to my future. In my future I want to become a veterinarian, actress, a canine police officer or a spy agent. I want to become a veterinarian because I would have the chance to work with animals. Becoming an actress would be nice too because that is the time when I feel the most alive. Also, I like when I get flowers and when people come to see me perform because I know they love me!
Even though when I came into the world I was very sluggish and tired because of my medical issues, I am proud of the great person I am today! I am just a normal person like you. I have been teased in the past and I probably will be teased in the future. One way I have stopped people from teasing me is to give them information about my conditions. Last October, I was given the opportunity to perform an assembly to my school about hydrocephalus, which was very successful. I showed them Boozle the bear from the Hydrocephalus Association that has a shunt in it. I also taught the kids that one of the things I have learned is that no matter what, “Sticks and stones may break my bones but words will never hurt me”. My presentation gave the message, “Don’t you let anybody beat you down just because you’re different because you’re amazing just the way you are!”
I hope to continue increasing awareness about hydrocephalus and trying to find a cure for everyone with hydrocephalus.