Thursday, March 27, 2008


It was my first week of being in Ft. Worth as I began to wonder who I would meet, and what new places I would venture to find. When all of the sudden I received a phone call from a lady named Cindy who had two children with FA!! She also headed the support group for people with FA in the area. She had gotten my number from the MDA in Ft. Worth. She was very excited to meet me and to have me meet her daughter for she was about 4 1/2 years younger than me! Dealing with the rarity of FA it is hard to find someone around your age, and we lived really close to each other. She asked me if I would like to join them at the Fort Worth Stockshow that weekend. I was excited. My first weekend in Ft. Worth and I already had plans! Cindy told me that her daughter was having a hard time accepting FA. Like me, she was diagnosed around the same time I was and was not in a wheelchair at the time. Cindy's youngest son Adam also had FA. He was still physically active. When they came to pick me up they all came inside to meet my family. They were all so nice and I instantly fell in love with them. As we got to the Stock show we ended up meeting (Cindy called him to come) another gentleman with FA there! His name was Frank and I will share about him in the next post. Meeting three FA'ers in one night, I could hardly believe it!

Below is a pic of the Mayne fam and I. They also have an older daughter that is not pictured. She was not around alot. I did know her though. This pic was not taken the day of the Stockshow.

The Maynes had become my second family. My mom, dad, and I started attending the support group meetings, and then I gained even more friends w/ FA!! I was always spending time at their house. Sara and I began spending quit bit of time together. She reminded me a lot of myself and we could totally relate to one another. I would look at her and sometimes get sad because I knew the road ahead of her would be rough for my FA was more progressed. Although she was more of an introvert she had no problem with the boys!!! Cindy told me once that Sara said she felt like I was her sister. That brought tears to my eyes. Sara, Cindy, and I were always spending time together whether it would be shopping, going out to eat, or going to the movies. One day we surprised Sara at the movies by watching "With Honors" starring Brandon Fraiser. He could butter her popcorn anytime! It is a really good movie if you have not seen it I do recommend it! We shared so many laughs together. Sara was attending a Christian High School about five minutes away from my house. I had gone over there on several occasions to have lunch with her. I even sat in on a couple of her classes. She was so much smarter than I was for she was taking trigonometry which I never even took in College!! Not too long after she turned 16 she began driving. She also used hand controls like I did. One night we decided that we were bored and would take a trip to Blockbuster to rent a movie. Sarah drove her car and I sat in the passenger seat. She somehow managed to shove my wheelchair into the passenger side back seat, and then go around to the driver's side back seat to put her walker in there. Looking back on it all I just shake my head! When she graduated from high school she also walked across the stage to get her diploma! I cried, I was so happy. Soon after that she also became wheelchair-bound. Cindy passed away after a long battle with cancer in 1999:( That was very hard. Sara also graduated from college With Honors! She got married, which she tells me is still hard to believe that someone could love her because of her FA. (I definitely understand, as a single woman I struggle with that about any man all the time.) She always wanted two children and that is what she got. I was around when the first one was little. I do not know how she managed to care for him due to her FA while her husband worked, but she did it! There was nothing easy about it. I know she has a helper with the second one. They are both really cute kids. During one of our conversations Sarah and I said how cool it would be to be able to progress backwards with FA! There is still one more thing that I will share with you in a couple of posts that I did with them!

I am still close with Sara, although she now lives in Georgia with her husband and two children. Her children are showing no signs of FA at this point! The pic on the right was taken in Feb. of this year as they were on the train and headed to the circus:) This is one of my fave pics of them. Nathan is on the right and will be heading off to kindergarten in the Fall. I cannot believe it! He is so smart. Annie is 2, need I say more! She is a very content little girl. Sara’s brother Adam is attending college. Their dad is now remarried to a wonderful woman and doing well!

Thank you for taking the time to read, Miss S

Saturday, March 01, 2008


Sorry for the delay, I have been under the weather for the past several weeks.

My family and I had known since the summer that there would be a big possibility that we would be moving to either Topeka Kansas or Ft. Worth Texas, because of my dad’s job transferring in the near future. We were all hoping for Ft. Worth Texas because of the weather, and the fact that we had cousins who lived in Ft. Worth that we would visit there every other year. So we were familiar with that area better. By the end of the summer we knew that Ft. Worth was going to be where we hung our hat! My dad started his job there in October while my Mom and I got things in order at our home in Tulsa. He stayed with our cousins during the week, and would make trips home on the weekends. Except for the times when Mom and him were house hunting. Some of my friends would tease me about going to Texas with the songs "She came from Ft. Worth" from Kathy Mattea (I was given this CD as a going away present) or "All my exes live in Texas" by George Strait.

Getting our house ready to sale was a chore and a half. My parents had lived there over 21 years so there was more then one junk drawer if you know what I'm saying! We had several paint parties. My Aunt made beautiful new curtains for our kitchen (w/a sewing machine), and a friend reposted a built in the kitchen area we had. Our house was looking nicer than it was before so I was saddened we were having to leave it! As Christmas time came we did not even bother getting out the tree or ornaments because we were packing them. I had to pack all of my belongings in to a suitcase, I was so sad. Where we lived at in Tulsa there was not a lot of opportunity there. You had to go across the river to get to a mall or anything. I was ready to see what was new, but at the same time this was all I ever knew.

My mom and dad went house hunting several times while they were there. They told us where they would to go in the houses, and see if the bathroom door could be enlarged. If not, they would look no further at that house. They finally came across a house where not only the bathroom door could be enlarged but that was able to easily get in the garage door. Of course we had to have the home close to my dad worked. We actually found a house close to just about everything. It was great. So, all in all I was excited for the fresh start to Ft. Worth. I was not going to be leaving anything bad behind just ready for the new possibilities.

As we were set to leave I just could not get in my last goodbye. It was very hard. My cousin, my brother, my grandmother, even my neighbors across the street. My Aunt had driven her truck with I in the passengers seat, my Uncle was driven the U-Haul truck., my Mom had driven her SUV, and my Dad had driven my car. It was so funny because my Aunt and I were behind the U-Haul truck that my Uncle was driven, and it hit the curb. My uncle was a professional truck driver. My Aunt and I had the biggest laugh about that. That started off the trip on a good note. It did not seem to take as long to get their. We got things unloaded in good time. One of our neighbors was from Muskogee. Small world and he helped us. Upon settling things in the first thing was getting the bathroom accessible for me. Our cousins who lived here had a neighbor who did construction work. So Paul came over to widen the bathroom door. Their daughter’s husband (still our cousin) knew of a person who could install & make bathroom bars in the shower and by the commode. Besides widening the bathroom door Paul also lowered the closet rail so that I could reach it. All of that was done in about two days. Things were beginning to look more homey than they had in the past couple of days.

I normally do not deal with change very well at all, and that was the thing that made me scared. Have you ever read the book, "Who Moved My Cheese?" By Spencer Johnson, M.D.? If not I highly recommend it as it shows an amazing way to deal with change in your life.

Thank you for taking the time to read, Miss S.