Sunday, August 27, 2006


Looking back through those younger years it seems as though things should have been caught sooner as to my disability. Especially due to the signs I showed, and the fact that the signs were not getting better only worse. If we knew of my diagnosis sooner I think my life as a young child would have been very different. I wouldn't have wanted to trade the way I grew up for anything. My parents always encouraged me to always do what I wanted, and if I fell to get back up and try again. Opportunities for me to have done some of the things I did probably would not have been done. For example, riding a bike, climbing trees, playing outside, playing sports, and doing some of the things in Elementary school. Everything happens for a reason. One of the best opportunities was being a child in the 80’s! I have a feeling that this could be a lot of entries that are continuing of the title due to me going into detail about some of these opportunities. Hope you enjoy!

Noticing the differences…
I never thought of myself any different than the other kids, although I was aware that there were physical differences. It was around the age of five others started seeing differences in me also. Nobody really had an understanding as to why I was clumsy or off balance and the other kids weren't. Even my pediatrician was convinced after doing some tests that I was just growing fast and was at that clumsy stage, and eventually would grow out of it. The first noticeable difference was that my balance was not very good. My dad said he remembers me pulling up from a couch and not letting go while I finished walking to where ever I was going. It was like I was afraid to let go. My brother never showed signs like this at that age. Because he did not see that happen all the time it was overlooked, but as he looks back now it was a sign. From the time I can remember I held on to anything and everything when walking. Remember when you were younger and walking along to not step on a crack or it just might break your mother’s back? Well I had my own version to try and walk as straight as possible to not break my mother’s back. I was in gymnastics between the ages of 6 and 7. Our team would go to meet's and perform in front of judges. I was afraid to do the balance beam, after trying it several times, for fear of falling. The only exercise I was comfortable with was the floor exercise. When we would go to the meet's I was always given the Honorable Mention Award. It made me sad that I was never given a higher award, but I never did quit because of it. Looking back now that too was a sign.

Thanks for taking the time to read,

Miss S

Saturday, August 19, 2006

1974-1977 IN THE BEGINNING...... [edited]

It all began during tornado season in Oklahoma. That was when I first began to voice my opinion (which hasn’t stopped!). I came a month early, because of my weight I stayed in the hospital for about 15 days. Dad said I was so small that I could fit in his shoe box! I was a pretty content little girl who would just eat, sleep, and poop! I became part of a family with loving parents, a two year old brother, and a basset hound named Jughead!

As I began toddling I did not seem to be delayed during those memorable firsts. Like the first time I sat up, crawled, or walked. It seemed as though nothing was going to get in my way especially those little white plastic tabs on my diaper. My mom said I used to pull those tabs off and stick them up my nose! To keep me content all you would need to do is set me down with a big pickle (it still works too)!! This is one of my favorite pictures of my brother and I. Weren't we cutties? Wonder what happened??

At the age of three I contracted H-Influenza meningitis. I had to spend 12 days in the hospital on antibiotics to clear up the infection. Up until that time I looked well-nourished, but lost all my baby fat after that. I was growing tall, and staying skinny!

I would love to hear any interesting and am embarrassing stories you have of when you were a baby. I told mine, and now it is your turn!

Thanks for taking the time to read, Miss S

Monday, August 14, 2006

1974-? What is really in my dash?

I hope this finds everyone doing well. I am excited for this is my first blog! I give all the credit for the tagline to this blog to my friend Parisjasmal. She was the person who not only put the idea of doing a blog in my head but she thought of the most perfect name very quickly. She thinks quick on her feet (maybe that is my problem!) Many hugs to you. Thank you very much. Check her out at She cracks me up!!!

Hi, you may call me Miss S! Many of you have probably heard the story and meaning behind the dash. For those of you who have not, the dash represents who you are and what you were in this world. When you're gone and have moved on what’s in your dash that is what you are remembered for. Sharing what is in my dash so far is something I have wanted to do for quite some time. I wanted to write about my emotional feelings and actions during my 30+ years of living with Friedreich's Ataxia (FA). A rare, genetic, and slowly progressive nerve disorder that I was diagnosed with at the age of 12. It affects my balance, coordination, fine motor skills, and muscle strength. It is also a form of Muscular Dystrophy (MD). FA does not define who I am by any means, but it has been a huge obstacle in my way that continues to be. For example, I was homecoming queen, have lived on my own, driven a car, got a college degree, had several jobs, and have done many more things despite my disability that I will all share with you about in detail later. I am not a doctor so medical advice is not my forte. You can do anything you put your mind to. The mind is such a powerful tool. I also wanted to share about my life to give others with FA someone they could relate to. Since FA is rare, it is not common to know others with similarities. It was 4 years before I met someone with FA, and the instant bond we shared was indescribable. Throughout my life these are some of the most important lessons I have learned: Laughter is the best medicine, not to sweat the small things, and not to feel bad in asking for help when needed. Your attitude means everything. I am not claiming to be a cheery person all the time. I have my moments like everyone else including those "why me" moments from time to time. When I get frustrated with things I tend to cuss, clean, scream into a pillow, workout, listen to music, or write. Geez, that sounds like I get frustrated a lot! Not every time I do those things am I frustrated (especially when I scream into a pillow, LOL!) at myself. Like the saying goes, there is no use in crying over spilled milk! Laughter is the best medicine, and I am the first person to laugh at myself. That is how I keep my sanity. If I stayed frustrated at myself for all my actions that are beyond my control I would be a miserable person. Even I wouldn't want to be around me if that was the case.

I hope you enjoy my blog entries. Do not hesitate to leave me a comment or to share something about yourself. For those of you who are interested in finding out more about FA you can go to or

Miss S