My Greatest Failure - October 2004

My Greatest Failure

My greatest failure is all the opportunities I miss because I am not in school. I get sick a lot and because of this, I miss a lot of school. When I get sick, I stay sick for quite awhile. Because I get sick so often and miss so much school, I miss out on what is supposed to be the greatest years of my life.

In ninth grade I went to school twenty eight days. I missed everything from homecoming to foreign language week. It isn’t that if I had been in school I would have been extremely excited about either of those things; it’s that I missed them altogether.

I have tried to stay healthy but no matter what I do, I end up missing something really cool. For example, my dad was going to take me to see Lion King on Broadway last year, but I was too sick to go. I was so sad even though I had already seen it before. But because I was too sick to go, some other little kid, who never would have gotten to see it if it weren’t for my being sick, got to go and see it.

So, even though I get sick, miss a great deal of school and miss out on things I really want to do, in the end I will probably turn out a better person because of it. I don’t have to deal with peer pressure or have a lot of school spirit. I get to concentrate on the important things, like my grades, my friends, and my future.

My Greatest Accomplishment - October 2004

My Greatest Accomplishment

I have absolutely no clue what my greatest accomplishment is. I have done so many things in my sixteen years, not the least of which is still being alive. I find that my greatest joy in life is helping others in any way possible. I believe that I was given the means to help people who are in need for a reason. I have accomplished so much just by being there for someone. I can’t imagine what my life would be like if I didn’t receive the help and support I needed during the tough times. I feel that it is my duty to “pay it forward”.

Other than helping others, I think another great accomplishment is my grades in school. I have basically become a homebound student in the last three years. Even though I am taught at home, I still manage to stay in the honors program for all my core classes. I try to maintain an A/B average even though I do get behind sometimes. If I do get behind, I can usually do a week’s worth of homework in about an hour.

I may not be the most popular kid in school or even have the best grades but I try my best at everything I do and have already accomplished great things because of it!

My Daily Life: Part I - December 10, 2004

My Daily Life: Part I

I peer through the clear plastic of my mask to see if it is light out yet. I listen to the sounds in my room to see if Brenda, my caregiver, is awake yet.

“Brenda?” I say, “Can I get up now?”

“Be right there.” She says. And so my day begins!

Brenda comes and takes off my mask and eye blanket. I like to sleep in total darkness so at night I put a bandana over my eyes. I guess you could call it a permanent side effect of too many hospital stays.

Brenda sits me up in my hospital bed and sets me up to do my two breathing treatments. I impatiently wait for her to get my tray and laptop computer so I can check my e-mail. Brenda gets my tray and laptop and props my elbows up with pillows and stuffed animals. I open my e-mail window, one-hundred and three new messages.

After reading all my e-mail, checking the SMA message boards, and finishing both breathing treatments, I’m ready to use my cough assist. I cough and cough and get up lots of mucus. Brenda uses my suction machine to clear the secretions from my mouth. I feel much better and am ready to have some breakfast now. I shouldn’t be hungry though because I “eat” all day and night via a jejunostomy tube. I also have a gastric tube for medication and air venting.

After breakfast, it is homework time, my least favorite part of the day.

“Which one first?” Brenda asks, holding up my Physics and Precalculus books.

“Neither” I say, but I will end up doing both.

I am an eleventh grader in the honors program. Other than Physics and Precalculus, I also take English, Forensic Science, Choir, and American History. I like all my teachers, even though I only saw them nine days before becoming a homebound student.

After I finish homework, I go back online. I check e-mail again and instant message a few friends. I also listen to some music or watch television. I love to multitask! While I am doing that Brenda usually makes dinner, tonight it’s Macaroni and Cheese, my favorite.

Brenda and I have dinner around 5:30pm and watch the news and Oprah until 8. By 8pm it’s time for three breathing treatments along with my Vest. I use my Vest to loosen the mucus in my lungs. When I can tell where a plug in my lung is located, I use a percussor instead of the Vest. When using the Vest, I do three consecutive sessions, which take about an hour or so to do. Luckily, I can do my breathing treatments and the Vest at the same time. I watch my favorite television shows while doing my breathing treatments and the Vest to pass the time more quickly.

My father and his wife usually get home sometime between 8pm and 10pm. By then they are ready for bed since they both leave long before I get up. I tell them good night as Brenda gets me ready for bed.

While Brenda makes my Tolerex, my formula that goes through my jejunostomy tube, I listen to a book on tape or CD. Listening to a book helps me to relax and get ready for sleep. When Brenda comes back, she hooks me up to my new food and to my “belly bag”. My “belly bag” is a drainage bag I use at night to let the air out that builds up in my stomach because of my vent.

After putting on my new food and my “belly bag”, Brenda gets my mask on and fills up my humidifier for my vent. I get covered up and snuggle under my sheets, My eyes drift closed, as I drift of to dreamland, where, just like in the real world, anything is possible if you just believe!

Dinner for Two - October 29, 2004

If I could have dinner with anyone, who would it be? I can think of so many interesting people, both alive and dead, who I would like to have dinner with. Today I have decided to be like every other American girl and go with someone who seems to be both gorgeous and charming. If I could have dinner with anyone, today I’d have say I would like it to be with Joe Nichols.

I got to see Joe Nichols in concert this past summer and I would have to say it was the best concert I’ve ever been to. I knew most of the songs, even though I had only bought his CD a few days prior to the concert. I felt as if he was singing to me when he sang “The Impossible”. He even got a little choked up when he saw me singing along.

I would like to have dinner with Joe Nichols for several reasons. I think it would be great to meet him and just talk to him, if I didn’t faint first. He seems really nice and I think I would like to see if he would become a spokesperson for SMA. I would love to hear him sing “The Impossible” and “Brokenheartsville” again. I also would like to talk to him about regular things, like what he likes to do in his free time and who his favorite singers are.

I know I could have picked to have dinner with Oprah, or my friend Kristin, or even my mom. But when it comes right down to it, I am like every other living, breathing, superficial girl. I want to have dinner with a cute guy.

Vocabulary Story - October 29, 2004

Mr. and Mrs. Corpulent had planned an extravagant trip to Borneo. They had hired a private jet and at noon on Saturday they were borne to Borneo. Due to the fact that the Corpulent’s were extremely corpulent, their plane didn’t make it to Borneo. Fortuitously, they landed safely on a lovely island somewhere near Borneo. Mr. Corpulent, who was rather swift in his thinking and reasoning skills, realized that the island was home to the world’s largest mini-golf course. Mrs. Corpulent, who was an avid mini-golfer, was thrilled. She never really wanted to go to Borneo anyway.

The Corpulent’s made their way, slowly because of their size, to Ali Baba’s Fabulous Mini-Golf Course. Mrs. Corpulent went to the first hole and set up her shot. The insidious clown head stared at her. She hit the golf ball with such force that she made a huge divot in the Astroturf and rent the clown head in half. Just as this was happening, Mr. Corpulent noticed a truculent storm heading toward Ali Baba’s Fabulous Mini-Golf Course. The portentous sky began to hail. Mrs. Corpulent began caterwauling that her game of mini-golf was ruined. To recede Mrs. Corpulent’s cries Mr. Corpulent mentionedthat there was a caravansary nearby. Mr. Corpulent hailed a golf cart and they made their way to the caravansary. After twelve days of continuous rain the Corpulent’s were finally able to play a round at Ali Baba’s Famous Mini-Golf Course.

Goals - October 29, 2004

Goals

The Merriam-Webster dictionary defines a goal as “the end toward which effort is directed”. In my opinion a goal is something that takes time and energy to reach. Some goals are long term, such as having a career and or a family. Some goals are short term, such as passing an upcoming test or joining a club. I have many goals. Most of my goals are long term but I do have a few short term goals as well.

One of my long term goals is two goals in one. I want to graduate from high school and go to college. I can’t accomplish the latter without first accomplishing the former. Going to college has always been a long term goal of mine. This past summer I decided what college I want to attend. I am still going to tour more colleges this coming summer but I am 95% sure that I want to attend Wright State University in Dayton, Ohio.

Another one of my long term goals is to continue encouraging and supporting familiesand children with Spinal Muscular Atrophy (SMA). I feel so much joy when I can help another family in any way. I hope that one day there will be no more new families for me to help.

I have many short term goals relating to school, learning more computer codes, and maintaining friendships. I hope to complete all of these things in a short amount of time. When I complete these short term goals, I’m sure that I will make more.

Goals are important to everyone. My goals may be different from my friends but they are just as important to me as my friends’ goals are to them. I hope I can accomplish all my goals and continue to make more.

My American Dream - October 19, 2004

My American Dream

My future is full of possibilities. My future would not be full of possibilities if I had been born fifty years ago. I would not be planning to go to college and make a life for myself. If I were born fifty years ago I would probably not be alive. The dreams I have now would not have been achievable for a person like me fifty years ago.

In 1971, my dad was a sixteen-year-old, the same age as I am now. My father was living in a small town in Ohio with his six brothers and sisters. He dreamed of moving to New York and becoming a fashion designer. At that same time my mother was living in New Jersey dreaming of being an actress. According to my father, neither one wanted to “settle down” and raise a family. Neither one would have guessed that they would meet, fall in love, and have two disabled daughters.

I was born in January of 1988. By June of that year my parents would be dealing with the most difficult news a parent can hear. I was diagnosed with Spinal Muscular Atrophy type I. The doctors told my parents I would not live to be three years old. I have proved them wrong and am now sixteen years old.

My father never would have guessed at age sixteen that he would be raising his disabled daughter alone. His dream of being a fashion designer didn’t come true. Instead, he works at Toys R Us as the Visual Display Manager. He designs all the shops that are in that Toys R Us. My mother never did become an actress, her life was cut short by a fatal car accident in June of 1991. My little sister, Emma, never got to live out her dreams of walking, either. Her life was also cut much too short, by Spinal Muscular Atrophy, in March 1992.

My dream at sixteen is to go to college: I want to go to college to continue my education. College, to me, is going to be the place where I get to perfect my talents and actually do something productive with them. I also want to go to college to prove to everyone that it can be done. There have been many people over the years who have told me that I would not be able to do something, so going to college will be my ultimate goal to prove the naysayers wrong. After college, I want to get a job somewhere working with computers.

I know that like my parents, my dreams for the future may need to change with the people that come into my life. I also know that my dreams, even if they change, will come true despite me being disabled. I will strive to reach my dreams and I will do it!