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Spring 2002 Table of Contents
Versión Español de este artículo (Spanish Version)

The Angel in My Life

By Honey S. Hastings, Sister and Future Teacher, Hondo, Texas

Editor's note: I first met Honey a little more than ten years ago when I connected to her parents, Mel and Richard Dugosh, and her brother, Chris. Now all grown up, Honey is a senior at Sul Ross State University in Alpine, Texas and preparing to become a teacher. She will graduate in December of 2002 with a degree in Elementary Education and hopes to move back to Central Texas, to live and teach closer to Chris. When she contacted me recently about sharing this article, I was delighted. I think you will enjoy it. It is always exciting to see the children we meet with deafblindness or visual impairments grow up and watch what they do as adults. It is also exciting to see what their sisters and brothers do. Honey, I know that you have made your mom, dad and Chris very proud. Honey can be reached at P.O. Box 5003, Alpine, Texas 79832. Her phone number is (915) 837-1603.

I was very young when he came into my life, the small brown-haired, hazel-eyed boy who fit in the palm of my Daddy's hand. Even though he had been carried to term he weighed only four pounds, which, of course, is not ideal for a healthy baby. The thing is, he was not healthy, according to my Daddy's voice on the other end of the phone that night, when he called to tell me I had a new baby brother. "What do you mean by not healthy, Daddy?" I asked, sitting on the lap of my elderly neighbor as a tear rolled down her age-worn face. A tear even I could tell was not sprung from joy.

You see, I was only four when Chris was born. I did not understand the technical diagnosis that the doctor had given. I could not even pronounce Cornelia de Lange Syndrome to save my life, let alone know what it meant. I did know, however, that I had a baby brother all to myself, to love in only the way a big sister could.

It is difficult to describe Cornelia de Lange Syndrome (CdLS), to those who have never seen an individual with this uncommon genetic disorder. There is no known cause, except an irregularity on the third chromosome, but that tiny error left my brother legally blind, deaf, mentally retarded, and physically disabled. It also placed my mom in a state of shock, especially while waiting for the doctor to do research to identify his syndrome. My brother has already lived past the day the doctor direly predicted his life would expire. He is now sixteen, thirteen years longer than the doctor said he would ever live.

Chris, even with all of his disabilities, really put that doctor in his place. He just simply survived. Since he has so many different disabilities, it's remarkable that he even has the ability to grasp a daily routine or interact with those around him. Nevertheless, from the time he came home from the hospital, he has had a constant smile on his face that could touch anyone's heart. His body, though tiny and disfigured, reminds me of an angel, with arms bent at the elbow and only one tiny finger to resemble a pair of wings. His eyebrows join in the middle to define beautiful hazel eyes that slowly gaze out on the world, only to catch shadows of life as it hurriedly passes him by.

Now as a teenager he is quite grown up. Although still petite in size, he is steadfastly approaching adulthood. I grew up with a fearsome devotion to my brother as I watched those around me recoil in his presence. I spent those early years attending school and playing with my brother at home. Big sisters love having someone around to play dress up with. It never occurred to me that not participating in the extracurricular activities for school, such as sports and what not, was out of the ordinary. My brother and I were inseparable. I was everywhere he tended to be. It always surprised me when we were out in public and everyone would stare. I remember asking my Mom, "What are they staring at? I don't see anything." Mom would just laugh and tell me that not everyone could see an angel. He was special, and we were blessed.

Photo - Honey and Chris
Photo - Honey and Chris
In my reluctant teenage years I began to resent that, having Chris as my brother, I had to give up quite a bit. My senior year of high school, I was needed to put Chris on the school bus, drive myself to school, get out early in time to get him off the bus, make dinner, clean the house, do my homework, and go to bed. Anything extra that I wanted to do for myself, I had to make time for. All of this was necessary, so my parents could work to make ends meet. It was my duty to help out, despite feeling that it was extremely unfair. I was only seventeen, and had done nothing to deserve this, so why did I have to sacrifice so much? Why did I have to give up the presumed best year of my life? Everyone else was out creating graduation year memories. Why couldn't I?

I am now only beginning to understand. I really did not give up much at all. The lessons I learned from my brother have made me the person I am today. I will be graduating from college early with a degree in Elementary Education. That will allow me to play with children and teach the things they need to know, in order to move on through their lives, outside of their homes and beyond the stars. I only hope I can teach these children as much as my brother has taught me about determination, life, love and devotion. I want to share with them just how important life is, and the role that each and every individual has. He is here to remind me that I can touch the hearts of children as they grow, and hopefully point them in the direction of happiness. I can change a life, just like he changed mine. He is my angel.

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Last Revision: July 30, 2002