CROSSED AND
CROOKED On a Sunday morning in October of 1955 the hospital was sparsely populated. Before leaving for lunch, the doctor checked my mother's progress telling her she had plenty of time before delivery. Shortly after, I arrived unassisted. It seemed that all the staff was truly out to lunch! It was obvious something was different about me. My head was lopsided, my eyes severely crossed and my feet were clubbed. There were feeding problems right away with my mother having to hold my mouth to help me nurse. My tongue curled off to one side, while my eyes did not blink or move properly. Local doctors thought I was blind. From that day on, my mother dedicated herself to taking care of me, afraid to allow others to do so. At about two years of age my crossed eyes were straightened and my tear ducts opened several times. I can remember seeing the hospital lights through the gauze bandages and smelling the strong odor of disinfectant, which makes me ill today. With bandaged eyes I fumbled like a tiny baby bird trying to find the spoon filled with Jello. The hard leather soled shoes I wore to correct my clubbed feet became lethal weapons when trying to be held down by medical staff. My mother soon had other problems to worry about - like my father's illness. He had always been sickly as a child and was diagnosed with nephritis of the kidneys at the age of eighteen. When I was just six years of age my father lost his battle, leaving my mother to fend for the family. At the time of my father's death, I had been in school over two years, starting kindergarten early at the age of four. I had no learning difficulty and remember loving to get out of class to go to speech therapy. My teeth became a problem as soon as they came in, decaying no matter what we did. I missed field trips and special days due to painful teeth. From the outside people saw a frail, tiny, crooked little girl. To me, on the inside, I was a strong, oversized, energetic girl who enjoyed wearing dresses with lace and frills! I soon found out that lace and frills didn't go along with turning upside down and climbing trees. I loved heights and would climb anything that got in my way. I gained much notoriety and attention when at age eight, I learned to walk on my hands. This attention seemed to draw away from my odd appearance. Staying in the same school for all of my elementary years helped to control teasing by classmates. When I was taunted, usually by older kids, my older brother made sure I received apologies. Sometimes, "I'm sorry" came through the taunter's tears! My mother told me when I was teased by children, I should feel sorry for them because they didn't have parents who taught them any better. I was gullible and did just that, which kept away bitterness that might have been sewn. At age thirteen my bad teeth were affecting my health and appearance. They were all pulled and replaced by dentures. During these years I had been to a chiropractor for regular treatments, ophthalmologists, optometrists, neurologists, dentists, oral surgeons, orthopedic specialists, family physicians and many hospitals and clinics. No one mentioned Moebius Syndrome. My mother always called my difference a paralysis when it was talked about, so that's all I knew. After starting junior high school, it seemed that each day was an obstacle. My fellow students whom I'd known all of my life, and some I had considered very close friends didn't want to associate with me. I suppose they were afraid of not being accepted by others. Every day I was taunted and called names, some days worse than others. I can remember my stomach turning into painful pulsing knots when I had to enter a room with a lot of kids. This followed me throughout high school. Academics just didn't seem to sink in with my mind on dodging ridicule. I did not date, go to dances or join social clubs. Social events at school would have been torture! After high school I was set up with a blind date. It went very well and I ended up accepting an engagement ring, but later came to my senses and returned it! My cousin helped me get a job at a restaurant located in a mall called the Purple Pickle. I got along very well with all of my co-workers and dated an employee of another store in the mall. It was great for my self esteem and I had a great time with my new friends. I was treated with respect and accepted for who I was. Being very independent and daring all my life, and having a small inheritance just waiting to be spent, I visited the travel agency in the mall. Making only $1.60 an hour, I went back and told my boss I had bought a trip to the Orient and then went home and told my mother. My boss took alot of flak from customers telling him he was paying me too much! My poor mother just shook her head and wondered what would be next. . . what a trip! I went to a new family physician and he suggested that I go to the University of Michigan Medical Center for information on my facial paralysis. I did, and at age seventeen first heard the words Moebius Syndrome. I had three reconstructive surgeries - including the temporalis facial sling. I planned all surgeries on holidays from college. After two years of school I met my husband on another blind date. I was so awe struck the first time we met that I told my mother he had gorgeous brown eyes; the truth is they are gorgeous, but they are blue! He was all I needed, so I quit school to marry and have children. I have two handsome, healthy sons with no signs of Moebius. I had always been told that my condition was not hereditary so the thought of my children having Moebius didn't cross my mind. In fact, my husband and I never really discussed my condition until I found the web site on my computer at age 41. My adult life was spent raising my children. I was very active at their school and made myself well seen and well known to their school mates. Children were curious, when I was asked about my appearance I explained that we are all different, such as hair color, eye color, etc. . . and when I was born I looked like this. For several years I owned my own business with my husband. It was a temporary employment service placing about two hundred employees in factories. Moebius did not get in the way of my success. Interviewing, hiring, and directing over five hundred employees a year was accomplished with respect and admiration from those employees and business associates. I took private pilot lessons during that time, becoming a budding pilot. Later on we moved to Northern Michigan where I became the Director of the Low Vision Department of a senior citizen agency. I loved working with blind seniors and found that I was accepted by the blind quicker because they couldn't see my facial difference. For me Moebius Syndrome has been little more than a nuisance. I believe that people with a facial difference can't afford to be shy. We need to let others know we are just like anyone else. I am normally very outgoing and social. I learned somewhere along the way that when I am stared at, instead of crawling under a rock which I always feel like, just opening my mouth and talking breaks the stares and tension. There will always be some we can't win, but making friends is a challenge for me and I have gained much, much more than I have lost. I also believe that children with Moebius need a strong family to support them and give them the self esteem they need to deal with life. After finding the website, I began to meet others with Moebius and became very emotionally involved - especially feeling a kinship with the children wanting them to have a better life and freedom from society's stereotyping. We all have to travel down the road of life alone. When the world tells us we are scum and unacceptable, we need to know the truth! Crossed and Crooked
My face was different so obvious to see,
Born with crossed eyes that were soon mixed with glasses,
I wore the shoes that I thought were so neat,
Doctors! Doctors of one type or another,
The death of my father at the age of six,
But one day a spark of light appeared,
Day after day I practiced hard,
Finally, upside down accross the land,
Attention no longer stayed on my face.
As I grew older I began to see,
At age thirteen with my feet on the ground,
When kids were mean and called me names,
My older brother cracked some heads,
It took some time but eventually I would see,
He made me "Special" so different from others,
Crossed and crooked is impossible to hide,
If I can make friends of those who stare,
Don't speak until spoken to, this is not my way,
To look like Barbie would be such a curse,
Growing up different was tough I could say,
So, thank you God for putting me to test,
CROSSED AND CROOKED
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