The Many Faces of Moebius Syndrome!

"My Story" by Tim Smith

I was born in 1963. At that time if a child was born with a deformity, impairment, or disabilty they were automatically labeled as being retarded and the parents were informed if they lived they would need constant care and supervision.
After my birth the doctors didn't give me more than a few weeks to live. They had no clue what was wrong with me. They thought my birth defects were caused by diet medicine my mother took before she found out she was pregnant. My mother never knew differently and took the blame with her to the grave. I could not suck on a bottle and I couldn't move my eyes. They said I just stared off into space even when I was sleeping. They had to give me iv's through my feet because that was the only place where they could get a needle in. With the fear that I was going to starve to death a nurse who''s name I never knew took it upon herself to try and feed me. When she got off of her shift she would come in my room and feed me with a spoon. It was the only way they could get me to eat. As you can imagine they could only give me a little bit at a time so feeding was a full time job. The nurse, my mom, and my grandmother, took turns feeding me.
Thanks to the nurse, my mother, and my grandmother, I made it past two weeks. Still the doctors told my parents I probably wouldn't survive more than a few years and if I did you know the story.... I don't remember much of the first two or three years of my life. I remember having to go to the doctors often. No fun at all. My parents did everything they could to make sure I got the best medical attention they could afford. My dad's medical insurance would not cover me because at the time they would not pay health care for children who they deemed to have no real hope.
My mom taught me how to read when I was four so I would be ahead of the curve when I started school. I remember in first grade we had a huge copy of "The Little Red Book", which sat upon an art easel. Everyone would take their turn reading it. When it came to my turn I would read it perfectly. Unfortunatly the teacher couldn't really understand me and since my eyes never moved she assumed I was just copying what the other kids had done. Almost every week my teacher and the principal would take me to the class for the special ed and the mentally retarded and say "Tim wouldn't you like to be in this class with other people like you?" Every time I would say "no." My parents fought the school system tooth in nail to keep me in normal classes. Eventually a compromise was reached. The school system told my parents they would allow me to stay in normal classes if I passed a series of tests which measured your apptitude and skills. They said if I didn't pass the tests I would have to be moved into other classes because I would be a disturbance to the other children. I remember taking the tests but I don't remember what they were about. I scored above average on every test. The person who conducted the tests became my parents ally and shortly after that the school system backed off.
Because I looked different than the other kids. Because I couldn't speak clearly. Because the only direction my eyes would go was cross eyed, I was teased every day. The other kids wanted the teacher to ask me a question just so they could hear me answer it and when I did they would laugh. I can remember a forth grade teacher who laughed along with them. The teaseing continued through elementry school. I was a wimp and whenever someone teased or hit me I would go running home to my parents crying.
When I was in seventh, eigth, and ninth, grade I became friends with some of the so called cool kids and I became cool by association. Unfortunatly when I was in eighth grade my father died of pancreatic cancer so my life started to take a turn for the worse. My father was my idol and inspiration. Somehow my mother managed to pull me through it and I continued to do well in school. When I was in ninth grade a guy who used to pick on me all the time cornered me in the boys bathroom and started hitting me. I knew I couldn't go home crying to my mother. She was at home fighting for her life in a battle against cancer. I had no choice but to fight back. To make a long story short when I left the bathroom he was laid out on the floor. The next time I saw him was in the Principals office and he was crying on his moms shoulder. From that point forward I never had any more problems with it. Every person who chose to fight me and there weren't many always went home crying to their mom even as an adult.
During the summer between ninth and tenth grade my mom passed away from cancer. She had battled it every since I was in forth grade. My brother and my sister continued to stay in my parents house, but I essentially raised myself. Over the next decade I drifted! I didn't finish high school, but I actually got my GED before my class graduated. The test was too easy. I got into a little trouble. Had a few adventures. I never got in trouble with the law. My fear of going to prison kept me from that.
My adult life went pretty smoothly. The moebius never got any worse or better. I amazed the doctors. My pediatrician even told me so when i ran into him in my mid twenties that he was shocked I did so well. I was supposed to die within the first few weeks. Then within the first few years. Then I would never make it into puberty. Then I wasn't supposed to make it past being a young adult. To be completely honest, all joking aside. i'm actually afraid to go to the doctor to this day becase I'm afraid they will tell me I'm healthy and will live a long normal life. :)
I didn't actually find out I had Moebius until my ex discovered it by going through old medical records. I thought I was the only one out there alone in the world. When i finally reached out to others with Moebius a whole new world opened up for me. I've met a lot of kind and caring people.
Looking back it's been a pretty good life. I've had some fun times. I've gone on some great adventures. I've stared death in the face and beat it. I've made some great friendships which have lasted for decades. I lived, I learned and I've loved. When I was in early fourties I met and feel head over heels in love with the girl of my dreams.
I am not sorry I have Moebius Syndrome. If I could change it I wouldn't. Everyone wants to be a unique individual. Everyone wants to be part of something special. I was lucky i was born into a group of very special people who I proudly call my friends. If it weren't for me having Moebius syndrome I don't know if I would have made it through those teenage years after my parents died. Having Moebius Syndrome made me a stronger, better, and wiser person.
Everyone has regrets. There are always things you wish had been different. I've made mistakes in my life. Some really bigs ones. Sometimes when I felt threatened or when someone tried to take something away from me I got mad and I stooped down to their level to try and pay them back. When I did this I lost big. I'm sorry! I wouldn't trade having Moebius Syndrome for anything in the world. But if I could have been granted one wish. I would have wished I had full movement of all of my facial muscles for just a few seconds. Just long enough to have been able to show my ex just how much I truely loved her before I lost her.

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The Rest of the Story! short version

updated 07/09/2009

Shortly after my ex and I split I lost my job. Then I lost the place where I was going to move to. Things for a while were looking pretty grim. Fortunatly I ended up getting the first job i applied for. Not to many people want to be exterminators and once you get your certification it's pretty easy to go to another company. I ended up moving to Woodbridge Virginia five blocks away from the first place I lived after I moved from home years ago. A week after I started the new job someone quit and I got the Alexandria route. Which is right where i grew up so it was a homecoming for me. Being in familar surroundings made the transition much easier.

Once I got settled in I knew I wanted to do something meaningful. I was determined to turn lemons into lemonade. I wanted to do something concerning moebius because it's what i have. I just wanted to find something which might help the kids with moebius to have little better life than I did. I met a few parents of moebius kids on myspace and we started talking about trying to get Oprah to do a show. The original plan was that we would get a few stories together than submit it to the show and let the chips fall as they may.

My life changed when I met Katie Pennycate and I knelt by her daughter Hannah's grave. I was supposed to die when I was kid. I was spared and she wasn't? What have I done to deserve this? Up to that moment not much! I'm not the most religious person in the world, but I do know Jesus and I talk to God! I whole heartedly believe there was a reason why i was brught to her gravesite. It was God's way of showing me what I could do. It was a very profound afternoon.

Shortly after that I turned my myspace page into moebiusneedsoprah. We went from having around 50 friends to almost 600 at one point. Only about a dozen of whom were Moebius Families. A lot of people wanted to see us go on Oprah. Thousands of people were reading the stories and blogs...

I kept hearing about facebook and how great it was so I decided to start a moebiusneedsoprah facebook page. I did a search under moebius syndrome and I found about 250 new friends who all had something to do with Moebius Syndrome. I was shocked. We went global overnight. I had people calling me and emailing me from all around the world giving me their words of encouragement.

Shortly after that I sent the stories into the Oprah show. Needless to say I didn't hear back from them. I knew from talking to the producers months before that we would have to submit the stories several times before we got anyone's attention. But once I joined facebook my focus started to change. It became apparent to me that getting the stories out there to share with the world and each other was more important then going on Oprah or any other show. At some point I'm sure i'll revisit the idea, but we can put more stories on the website than we could ever share on Oprah.

I created the website because I didn't want the stories sitting on my hard drive going unread. Right now we have around 35 stories on the site. If everyone who has promised to write a story does so we should have around 100 stories. It is estimated that there are between two thousand and five thousand people with Moebius Syndrome around the world. My goal for the website is to get 5001 stories. :)

I want to keep changing the website around so people keep having reasons to visit it. I don't want this website to be my website. I want it to be a website for people with moebius syndrome and their families. If anyone has an idea for it then please share it with me.

I had the opportunity to do a bit of motivational speaking for a small group a while back. I really enjoyed it and want to do more in the future. Hint! Hint! If someone like me can face the hits life dishes out and still find a way to crawl from the ashes then anyone can do it. That is my message. I have no aspirations to be a leader or start my own foundation. lol I am very content being a voice in the choir. I'm looking forward to going to Europe and meeting some of my new found friends overseas. I'm looking forward to going to Denver next year for the conference. Although I haven't said anything about this yet I'm looking forward to going to Canada and having dinner at Deb Mcdonalds house. I was told she is the best cook in the world. I have to go there. :)

Many of you who know my personal story have asked me what's next outside of moebius and work? Will I cross a familar bridge, stay where I'm at, or move someplace new. I'll be thinking a lot about those questions in the days and months to come. There are always possibilities. Right now I feel young. Younger than I have felt in many years. I want to enjoy it for a little while. So for now the direction i will follow is, second star to the right and straight on till morning!

Tim Smith

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