Was born on March 7, 1943. Mom was having complications with the birth, so I was born at a near-by hospital. Noted this because Mom always thought what proved to be Moebius Syndrome was due to an injury during the birthing process.
During the first days of life I experienced rapid weight loss. Only by chance the doctors recognized I could not nurse and was starving. From then on Mom fed me milk with a spoon until at eight months (I’m told) when I learned to drink from a cup – messy, but effective.
After WWII ended and gas was again available, the folks took me to Denver Children’s Hospital where I was poked and prodded by well meaning physicians trying to understand the root of all my problems. Was two at the time and still remember the experience. In my twenties I started to talk one day of the Denver experience, and Mom said, “You can’t remember that!” When I started to describe to her the color of the cushions on the chairs in the waiting room, she quickly became a believer. The Denver specialists weren’t aware of Moebius, so my condition remained undiagnosed for another forty years.
My Moebius conditions include no facial movement, including not being able to close my eyes; eyes that do move vertically but not laterally; inability to form words with my lips and tongue which results in the inability to correctly make a lot of the letter sounds; and a small and deformed right hand. I’ve also always had a great deal of stiffness and inability to move certain ways, such as correctly throwing a ball and swinging a golf club. I was two plus when I finally walked. Again, my mother always thought I had suffered a birth injury, but she never could explain the deformed hand when I became old enough to question.
Grew up in a small Colorado community with by-and-large great people, but still suffered the stares, finger pointing, and teasing other Moebius folks experience (and we still do!). Wasn’t a fun time, but there were enough good people in my life that accepted me as me to get past the rougher periods.
During my teen years everything changed. My facial paralysis and speech problems kept me apart from the ‘in crowd’ and out of the dating scene. Know now that some of this was self imposed (Beauty and the Beast comes to mind), but at the time the hurt was deep and long lasting. Took me over a decade, a college degree, and a rapidly growing career for me to put those teen age thoughts behind me, but I get ahead of the story.
Not sure when the idea first entered my head, but somewhere in the pre-teens I decided I wanted to be involved in engineering. Learning came easy to me, and an engineering career seemed within reach. Unfortunately the ‘experts’ always told the folks that those lofty goals should be given a dose of reality. Whatever I ‘had’ would limit my ability to learn and function in society. Little did the ‘experts’ understand that kind of put-down just intensified my desire to achieve. I was determined to go to college, and knew the folks didn’t have the financial means to help, so I channeled my lack of a social life into earning college money.
Need to fast forward – this isn’t intended to be a book. With the money I earned in high school and summers, plus a four year tuition, fees, and books scholarship, I graduated with a degree in Civil Engineering and multiple job offers. Vietnam was hot in 1965, but the army classified me 1-Y (available in a declared war) so I went immediately to a job and part-time graduate school. Took a job with USDA where I spent 40+ years in engineering, the last thirty in a national level leadership position. One of the ironies of all this is I had to learn to speak publically which always was terrifying as a teen. At times I’ve spoken to as many as 5000 in a group. God certainly has a sense of humor! Believe without a doubt the determination and work ethic I developed in those teen years made my career possible.
As my career took off and I realized maybe there was acceptance of me as I am, I also noticed there were women who wanted to be part of my life – I had always held them at arm’s length. Was unbelieving at first, but later accepting. A couple of broken hearts later I met and married my best friend and the love of my life, Maryke, in 1972. We’ve been married almost 42 years, have three children, and six grandchildren – all this through the grace of a loving God.
Over the years God has put me in positions where I’ve been able to assist others including heading a national prison ministry and co-founding an international missions organization ministering in Zambia. Some would say my little successes professionally and socially are in spite of having Moebius, but I’m thinking maybe it’s because of it.
Maryke and I both retired several years ago and have enjoyed travel and family. Seven years ago I accepted a half time position with Texas A&M’s Agrilife-Research. Keeps my mind active and funds the travels and house remodels. We’re both active leaders at Crossroads Christian Church in Grand Prairie, TX, where we’ve ministered over 17 years and find joy in serving the Lord. It’s good to be surrounded by loving, caring people, and serving with a great pastor!
Back to the Moebius story. In the 1980s I read a newspaper article about a doctor who was going to perform ‘smile’ surgery on a young woman. As the story was unpacked, I came out of my chair, because the woman’s characteristics were the same as mine, and she was suffering with the effects of a birth defect known as Moebius Syndrome. Here I was, in my 40s, and now knew there was ‘something’ that accounted for the range of symptoms I had. Even having a name wasn’t enough to convince doctors, though. It took years of research to dig up enough information on Moebius to begin to get the attention of my doctors.
It’s encouraging to me that others are now being diagnosed as babies, so they have a ‘family’ to fall back on when the going gets rough.
Ten or so years ago I made contact with the Moebius network, and met Lily Richards and her family. Since then, I’ve met so many great folks who either have Moebius or support those that do. The bi-annual conferences are great, and they will be on our calendars as long as we can afford the money and the time, and have the health to participate.
Attended a memorial service for a dear lady a few years ago. Our pastor said something that I had embraced in years past, but never formed into words. He said words to the effect that happiness was not just learning to weather the storms of life; happiness was learning to dance in the rain. I trust as I continue to grow old (hopefully gracefully), I’ll still be taking dancing lessons!
What Moebius Syndrome Awareness Day means to me.
To me Moebius Syndrome Awareness Day (MSAD) provides an opportunity for my friends and associates to have one of those AHA moments. You know the ‘aha’ feeling when your first science experiment works, when you first see a mother cat give birth to kittens, or when you get the first kiss by a member of the opposite sex not a relative (unless you’re from Arkansas). I want others to begin their AHA moment with Awareness; understanding what Moebius Syndrome is all about; its different manifestations, and being aware that by and large most Moebius folks are normal in all other respects. Next I want them to move to Honesty – honestly recognizing the worth of each individual and honestly believing that, “Except by God’s Grace go I.” It’s only through awareness and an honest appraisal that others can then move on to full Acceptance of those of us with Moebius Syndrome. I pray as we approach MSAD 2015, we’ll all strive to bring one of those AHA moments to those we know and/or influence. God bless!