On a Sunday morning in October of 1955 the hospital was sparsely populated. Before leaving for lunch, the doctor checked on 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 her self 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 fathers 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, over sized, 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 brother made sure I received apologies, sometimes through the taunters tears! My mother told me when I was teased by children, I should feel sorry for them because they didn’t have parents that 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 was 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 considered very close friends, didn’t want to associate with me, afraid they might not be 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 through high school. Academics just didn’t seem to sink in with my mind always 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 on 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 called the Purple Pickle. I got along very well with all 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 of my life and having a small inheritance just waiting to be spent, I visited the travel agency in the mall. Making only $1.68 an hour, I went back and told my boss I needed time off because I had just bought a trip to the Orient and then went home and told my mother. My boss took a lot of flak from customers telling him he was paying me way 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 that suggested 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 re constructive surgeries, including the Temporalis Facial Sling. I planned all surgeries on holidays from college. After two years of school I met my husband Carl on another blind date. I was so awe struck the first time we met I told my mother he had gorgeous brown eyes; the truth was they were gorgeous but they were blue! He was all I needed so I quit school to marry and have children. We had two handsome, healthy sons with no signs of Moebius. I had always been told that my condition was not hereditary so the thought of our children having Moebius didn’t cross my mind. In fact, Carl 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 I became the Director of the Low Vision Department at a senior citizen agency. I loved working with seniors and found that I was accepted by the blind quicker because they couldn’t see my facial difference. In 1998 I attended my first Moebius Syndrome conference. This was an amazing, life changing experience for me.
With the Internet becoming more and more prevalent, I not only found others with Moebius for the first time, but my husband Carl also found others. I lost my husband to an Internet romance; we divorced in the year 2000. Starting over, newly divorced at age forty-five was pretty tough. Struggling to get on my feet, I tried working as a corrections officer at our local jail, that lasted for three long months. I eventually landed a job that was really great for me. I worked for our local Intermediate School District as a Family School Liaison/Home Visitor in the Early Education department. I am also a self-taught photographer working on weddings, family portraits, high school seniors and groups.
I became a grandmother to a set of twin boys in 2005, they have plenty of facial expression and show no signs of Moebius Syndrome. During this time, I met the most wonderful man in the world Allan Dhaseleer. We met during a DivorceCare program at his church and became best friends. He offered to have a Moebius adult get together at his home one summer. I didn’t know it at the time but that was his introduction to my Moebius family and part of the world he would be sharing with me. We married in 2005 and he has attended two conferences and two get togethers. Allan and I together have six children and five grandchildren and live in Charlevoix Michigan.
For most of my life Moebius Syndrome has been little more than a nuisance. In my forties my vision began deteriorating, with severe dry eyes causing debilitating results. I had gold weights implanted into my eye lids to help them close. I have recently had a Tarrsoraphy, a surgery to sew the outside corners of the eye lids closed which keeps a little more moisture on the eye protecting the corneas and a cataract surgery. Wearing protective eye wear, such as goggles and sunglasses has become a must.
After finding others with Moebius Syndrome, I felt like I had found a family I didn’t know existed.
I believe that people with a facial difference can’t afford to be shy. We need to let others know we are just like everyone else. I am normally outgoing and very social. I learned somewhere along the way that when I am stared at, instead of crawling under a rock, which I always felt like, that 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. We all have to travel down the road of life alone. When the world tells us we aren’t as good as others we need to know the truth!