Greatest Fear - December 2004

Greatest Fear

My greatest fear isn’t really something that I can put into words. I fear the unknown. I know that it may sound dumb but it is what I fear. I fear things I have never experienced and know nothing about.

I used to fear my g-tube changes. I didn’t understand the pain that is involved and I was very concerned about it. I now know that the pain is very minimal and that if we were to have a problem, we could easily insert a smaller size tube.

I am still afraid of being intubated even though I have been several times. The reason I’m still afraid is because each time different and is more dangerous for me. I get very nervous every time I am told I have to be intubated. Luckily I don’t have to be intubated very often.

There is song by Billy Gilman that was adapted from a poem by Mattie Stepanek that describes everything I feel. The lyrics are:

One of my greatest fears is It
I can't touch it, but I can feel it
It does not have a taste or smell,
But I can hear it in my spirit.
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
It is something I can't see
It can never possess me
It always tries to take control,
I can defeat it if I believe it.
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
It keeps running through my mind,
I have to fight it time and time
And time and time and time
And time again...
CHORUS
It is deep inside of me,
It makes me fear my memory
One day I'll live peacefully
Without the fear of It
The more I understand about it
The less my world revolves around it
Then I can just live out my life
Without the fear of It

My fears are easily quieted by knowing more.

Happy Holidays- December 2004

Happy Holidays

So much has happened in the last year. I have traveled far and stayed close to home. I have gained some wonderful friends and lost some I thought I would have forever. I have changed in so many ways, some for the good, some not so good.

Over the past few years I have been really sick. From being home so much, I have learned a lot about myself. I have learned that I have a great deal of willpower. I can do homework, which takes the kids in school a month, in 3 hours. I have really learned a lot more being home. It has taught me that I can do anything I put my mind. I have also learned which friends I can depend on for anything. I have learned about my own inner strength and the strength of the people around me.

I want to thank everyone that has supported me and all of my endeavors. I have the most wonderful family and friends. I love each and every one of you. I hope you all have the happiest of holidays and a happy, healthy, and wonderful New Year.

Sad Things - December 2004

Sad Things

Ordinarily, this journal would be difficult for me to write, especially with it being the holiday season. I am usually eagerly anticipating all the wonderful gifts I will receive and can’t wait to find out what everyone else thinks of their gifts. This year is somewhat different. I rarely think of my gifts and can hardly believe that Christmas is less than 2 weeks away.

I don’t normally get sad. I think of all I have; a roof over my head, clothes, friends (although they are few and far between) I can count on, and family who loves me. I can’t help but feel sad sometimes. I have lost so many friends this year, be it to differing opinions or because they no longer had time for me. I can’t help but think of the times I lashed out at my friends and never said “I’m sorry”. I cannot dwell on the sadness though because if I do, I will only end up dragging myself down with the “what if’s”. Life is too short to dwell on the sad parts. I just have to remember that “there’s always tomorrow” and if I live to see tomorrow, I’m given the chance to change.

Regents Essay 4 - January 2005

Session 2, Essay B

H. M. Tomlinson said, “The right good book is always a book of travel; it is about a life’s journey.” I believe that what H. M. Tomlinson is referring to is that even if a book is fictional, the characters learn something about themselves or about life. I agree with what Tomlinson says. I have read many books that validate the quote. The two books that I think best represent the quote are “Miracles Happen” by Jean and Brooke Ellison and “The Me in the Mirror” by Connie Panzarino.

“Miracles Happen” by Jean and Brooke Ellison is an autobiography of Brooke Ellison’s life with sections written by her mother, Jean. This book provides both perspectives of a situation. Both authors have a strong-willed character and will stop at nothing to achieve Brooke’s dream of graduating from an Ivy League University. Brooke and Jean describe the almost constant uphill battles they had to face every day. The battles range from allowing to live at home, to attending school due to her disability, to going to college with her mother as her attendant. “Miracles Happen” is Brooke and Jean’s journey through life from age seven until Brooke’s graduation from college. Brooke and her mother learn about themselves along the way, which is the main theme of this book, self-discovery. “Miracles Happen” truly is a book about a journey in both the physical and metaphysical sense.

“The Me in the Mirror” by Connie Panzarino is another novel that is about Connie’s journey through life. This is Connie’s autobiography of the trials and tribulations she faces along the way through her life’s journey with Spinal Muscular Atrophy. She discovers how independent and strong she can be when she is faced with difficult situation. The theme of this book is also about self-discovery and ultimately finding out who you can be even if people don’t like it or believe it. Connie struggles for acceptance at every school she attends, first to a special needs school, then being mainstreamed in school and finally in attending college away from home. Each step of her journey is discovery of something new and something learned about herself and others. “The Me in the Mirror” is a journey of life, from the moment Connie is born until her life’s journey on earth has ended, complete with bumps and curves along the way.

As we grow up, our life takes us on a journey. We learn about ourselves and others. We struggle through life in certain parts while in others we slide right through. Each person travels through life at different rates and with different curves along the way. Like a good book, “The right good book is always a book of travel; it is about a life’s journey.”

Happy Things - December 2004

Happy Things

There are many things that make me happy. I am usually happy when others are happy. I am happy when I find out that a card I made brightened someone’s day, when I give a blanket to a child, when I visit a friend’s website and learn they are doing well. It’s the small things that make me happy.

I am happy when I get to go somewhere, other than the doctor’s office. I enjoy the first snowflake that lands outside my window. I love summer vacation! The trips to places I’ve been a thousand times before, are some how different and wonderful every time I go. Going to the water and swimming until I can’t swim anymore is always fun, until the next morning when I wake up stiff and sore. I get excited every time I receive a package in the mail, especially if it is something to give to someone else. Happiness is living in the moment.

I am most happy when I go and go all day long and come home and feel as if I could go for days. I am happy to wake up in the morning and know that I can do something new and exciting. I’m glad that I get to live each to it’s fullest potential and do again tomorrow.

Traveling with SMA - December 2004

Traveling with SMA

I love to travel! I have been told that because of my disability, I cannot and should not travel. Luckily, I’m not a very good listener when someone tells me I can’t do something. My caregiver, Brenda, and I have been almost clear across the United States. We’ve driven from New York to Wyoming, and numerous other places in between!

Brenda and I do our traveling by van. We do this because of the amount of medical equipment that I have to take everywhere with me. Road trips take a great deal of planning for anyone, but when you add in medical fragility and all the equipment that goes along with it, you have to be prepared for any kind of situation that could arise.

When Brenda and I decide that we would like to travel somewhere, be it to my grandparent’s lake house in New Jersey or to Brenda’s aunt’s house in Minnesota, we need to plan in advance. We must first figure out how long it will take us to get there. I can only travel five to six hours a day because of my health. If it will take us more than five to six hours then we need to find a hotel to stay in. The hotel must be accessible and have the option of a roll away bed or fold out couch; this is because I am transferred via a lift. The lift has to have room to go underneath the bed and most hotels have platform beds. Once we find the hotels and book a room, we need to prepare all my medical supplies. We need to make sure that I will have enough formula, feeding bags, ventilator tubing, and such, to make it to and back home from our vacation. We also must be prepared for the worst case scenario. If my gastric tube malfunctions then we need to be sure we have another tube available at a moments notice. Anything can happen so we need to be prepared for it.

After all the planning is through we wait, impatiently, for the travel date to arrive. A few days in advance Brenda begins to pack the van. She packs my medical supplies, our clothes, and other things we don’t use on a daily basis. When the travel day finally arrives, it is a packing nightmare. Brenda and I have traveled together so many times that Brenda now has it down to a science. Everything has its place and won’t move an inch until we reach the hotel.

I am the last thing to be loaded up. During the drive, I usually watch movies or listen to the radio. If it is summer, I sometimes listen to books on tape or CD. When we reach the hotel, Brenda has to unload all the necessities. By the time we reach our room, we are worn out.

When I travel, I get to see things and meet people that I never would have if I listened to the people who said I shouldn’t and couldn’t travel. Traveling is always an adventure, even if you are just going down the street. It is my favorite thing to do and I can’t wait for my next adventure!

Thanksgiving Thoughts - November 2004

Thanksgiving Thoughts

This Thanksgiving wasn’t supposed to be anything special. My family would come, we would eat, talk a little, laugh a lot, and everybody would go home just as they had come. Instead, this year I will be mourning the loss of a friend and be even more thankful for every day I have with my loved ones.

On Thursday, November 18th, 2004, Cole Daniel Webb went home to God. He went peacefully, for which everyone is thankful. I had just recently become very close with his mother, Kristin. I loved when I would call and she would put the phone up to Cole and he would babble away at me. I’m going to miss that. I’m going to miss the pictures of Cole and the updates on the new things he could do. As much as I will miss him I know in my heart I will see Cole again. For Kristin and her husband, Dan, I hope the time apart from Cole will only seem like an instant and they will be back with their Bongo Boy again.

So this Thanksgiving, when we sit down at our table, let us not forget the people who are hurting. Let’s remember that every day is a blessing, every moment a treasured gift, and every instant is one instant closer to seeing our loved ones again.

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!

3 most important things to me

“The three most important things in my life” question didn’t take me long to answer. My answer is probably different from most girls my age. It is also not the generic answer of family, friends, and popularity or a boyfriend. I do value my biological family, my friends from school, and that little bit of popularity I have because of being the only kid in my school who uses a wheelchair. However, these things and people are not the most important things or people in my life.

I think the foremost important thing in my life is my SMA family. In some ways I am closer to this family than I ever will be to my biological family. We, in the SMA family, fight just like every other kind of family but when it comes right down to it we love each other more than any biological family ever could. This is because we understand the problems that each member of this very diverse family faces. It is a rare day if at least one person hasn’t faced a similar problem to the one at hand. We love each other for our differences and similarities. This family faithfully stands by each member of the family in hard times. We are all one heart united by a terrible condition that we will beat together!

The second most important thing to me ties directly into the first. It is the health of my SMA family and myself. When someone is sick, whether it is a kid, teen, or adult with SMA or one of their family members, everyone sends well wishes. We pray that each and every person will stay well. When I am sick, I get so many “get well” cards and e-mails. Every note makes my day a little better!

The third most important thing to me is going to college. This is important to me for a few reasons. First, 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.

I’m guessing I did not give the general answer to this question. I don’t know if the things that are important to me will change over the years, but I’m guessing that they will. But right now these things are the most important things and people to me!

Journal 4

She’s A Butterfly

One of my favorite songs is “She’s A Butterfly” by Martina McBride. I read the lyrics to this song for the first time last year. It was on a day when I was feeling particularly sad for myself. That doesn’t happen too often, but when it does I need something or someone to help me out. I read the lyrics over and over trying to figure out why this song made my day better.

The title, in its self brightens my mood every time I see it. “She’s A Butterfly” reminds me of one of my little buddies, Mia, who earned her butterfly and angel wings last year. Her mom, one of my dearest friends, always thought of Mia as a butterfly. I know that Mia visits me, in the form of a butterfly, whenever I need her.

I also tend to think of “She’s A Butterfly” as my song. I know that may sound selfish and conceited, but I truly think it is a little about me. The line “Nothing's ever gonna bring her down. And everywhere she goes, everybody knows, she's so glad to be alive” is how I try to live my life. I try to stay positive and never let what people say get to me. If I listened to all the people who said I shouldn’t or couldn’t do something, I would not be where I am today. I am glad to be alive and will continueto live each day to the best of my ability. I will end this with the lyrics to “She’s A Butterfly” by Martina McBride.

She's a butterfly

She remembers when she first got her wings

And how she opened up the day she learned to sing

Then the colors came, erased the black and white

And her whole world changed when she realized



She's a butterfly, pretty asthe crimson sky

Nothing's ever gonna bring her down

And everywhere she goes

Everybody knows she's so glad to be alive

She's a butterfly



Like the purest light in a darkened world

So much hope inside such a lovely girl

You should see her fly, it's almost magical

It makes you wanna cry, she's so beautiful



She's a butterfly, pretty as the crimson sky

Nothing's ever gonna bring her down

And everywhere she goes

Everybody knows she's so glad to be alive

She's a butterfly



God bless the butterfly

Give her the strength to fly

Never let her wings touch the ground

God bless the butterfly

Give her the strength to fly

Never let her wings touch the ground



Oh, she's a butterfly, pretty as the crimson sky

Nothin's ever gonna bring her down

And everywhere she goes

Everybody knows she's so glad to be alive

She's a butterfly



God bless the butterfly

Give her the strength to fly

Never let her wings touch the ground

God bless the butterfly

Give her the strength to fly

Never let her wings touch the ground

Success 9/24/04

The True Meaning of Success

S.I. Hayakawa said, “People who like to think of themselves as tough-minded and realistic tend to take it for granted that human nature is “selfish” and that life is a struggle in which only the fittest may survive. According to this view, the basic law by which people must live is the law of the jungle. The “fittest” are those people who can bring to the struggle superior force, superior cunning, and superior ruthlessness.” Based on this thought, do people have to be highly competitive to succeed? I don’t believe that people have to live by the law of the jungle in order to succeed. My standpoint is in how you view the word “succeed” or “success”.

Does one have to be rich and famous and selfish in order to be considered successful in today’s world? To most people, the answer would be “yes”. In my opinion, this is not true. I know a woman, who I consider to be very successful in life, but most people do not know her name and won’t see her on the news. Is she less successful than Bill Gates, Donald Trump, Jay Gatsby, or even Julia Roberts? Yes, if you consider notoriety and riches, but she is extremely successful to the people who know and rely upon what she does.

Laura, is not rich by any means, but is rich in the way that is most important; which is love and caring. My friend Laura has lost two sons to Spinal Muscular Atrophy and continues to selflessly immerse herself in the SMA Community. She is considered successful by those of us who spend innumerable hours or just one minute with her. She tirelessly and selflessly devotes her "free time" to making web pages for all those who wish to share their loved ones with the world. She also developed SMA Support website and is there for every family that needs support in any way, shape, or form. She is there emotionally and financially if there is a need for it. She is living out her sons? legacies by supporting anyone who needs help and creating awareness about this devastating condition. Laura doesn't need to compete with other organizations for money or for what she accomplishes, because sometimes, in order to be successful, one doesn't need to compete. Success can be measured not by competitiveness and who you hurt in the process but by whom you helped in the long run.

You wouldn't know by looking at Laura, how successful she really is. She doesn't have a fancy car or live in a huge mansion, but is successful in the amount of time, energy, and love she pours into her endeavors. To me, that is the greatest measure of success. If you can look back on your life and say, "I helped someone!" or "I made a difference in someone's life!" then you are successful and it was completed without force, a cunning attitude or being ruthless.

SMA - Precalc Essay 9/22/04

SMA, Spinal Muscular Atrophy

One of my passions in life is helping others. I am particularly passionate about Spinal Muscular Atrophy and the families that deal with it on a daily basis. In case you don’t know, that is why I use a wheelchair to walk. I have Spinal Muscular Atrophy, SMA, type I. This is the most severe type of SMA. I am considered a “Super I” by my doctor because I don’t fit into the “normal” type I category or the “normal” type II category.

For the past three years, I have been making cards for kids with SMA and their siblings. I do not go out and buy the cards, but make them with Brenda and my cousins in the summer. I started out by sending 10 cards a month and I’m now up to about 100 families. I try to send a card once a month to each family but some months are harder to do than others. Last year, I missed two months, but in the summer time, each family got 4 cards instead of 2, so I guess it evened out.

This year I started an organization for newly diagnosed children with SMA. I started it in April of 2004. I started my organization because Brenda, my caregiver, had made me too many quilts. Brenda learned to quilt a few years ago and by April she had made me more quilts than I needed.

So that she could continue to enjoy quilting we had decided that we were going to help a friend who had an organization that gave blankets and toys to children with SMA. Brenda told her mom about this organization and her mom decided to help too. When Brenda came home from Easter vacation she had several quilts that she and her mom had made. When we contacted our friend she informed us that she was no longer going to be doing her organization. We were unsure what we were going to do with so many blankets, so I decided that we should start our own organization, B4SMA (Brenda came up with the name). B4SMA stands for Blankets for Spinal Muscular Atrophy kids. To this date, I have sent out about 30 different blankets to kids across the Unites States.

As you can tell, I love my SMA family. Each kids that is diagnosed, their siblings, and parents have all become a part of my "extended" family. I love each of them for different reasons and when they hurt, I hurt too. I will always cherish the friendships I have made and will continue to help them and new families in any way possible until I am no longer needed.

Journal 3 - 9/24/04

How Would Gatsby’s Money Change My Life

I think Gatsby’s money would definitely change my life in many ways but for the better. Would I use the money specifically for my own gain? The answer would be a definite NO. I could think of so many people and organizations that I would like to give some of that money too.

I think first off, I would buy an accessible airplane. I would use this airplane, not just for myself, but for good of others. For example, if someone was sick, I would bring them to one of the three doctors who know how to take care of SMA kids properly. There are so many doctors who don’t know how to properly care for a child with SMA and always tell the parents that there is no hope. I would also use my plane to hand deliver blankets to newly diagnosed families from my organization, B4SMA.

With the money, I would be able to buy more fabric and supplies for B4SMA and be able to make more blankets. I would also be able to make more cards and be able to send cards internationally. I would love to be able to expand MJ’s Cards, Ltd. to more kids than just the ones I currently send. I would get a computer specifically for making cards and envelopes and also for designing webpages for more kids. I have done 4 websites and would love to be able to do more.

How would I accomplish this and do school? I would hire a private tutor so I could stay home and work when I can and avoid the downfalls of attending a public school with all the germs surrounding one there.

I know that I would have different friends, mostly because people only care about money. They would want to be my friend, more for the money, than for who I am. Of course, I would see right through them, as I can, and not tolerate their fake friendship.

Journal 2 - 9/22/04

Pet Peeves

Each year, we are asked this same question, “What are my biggest pet peeves?” Each year, I think I will write about the same thing, but I always end up doing something different. Last year, my biggest pet peeve was two-faced people. This year, I have one major pet peeve. It is aides who are not helpful to my success in school.

My pet peeve is aides who are not helpful to me. I have had 8 different aides throughout my school years in PC school district and I have really only liked 3 of them. Having a good aide helps the year go by successfully and makes my life easier. The aide I had in 3rd grade and again in 5th grade was far from helpful. First of all, she did not speak English well, so trying to dictate homework and class work was downright impossible. Half the time, she would be reading a book or writing down what she thought the answer was and not doing her job. My current aide is no exception. She can’t take notes correctly and make studying difficult. For example, in history class last year, her notes would consist of, “Discussed World War II” or “Discussed Ottoman Empire”. I mean, get real, how was I to study based on that! This year, she is starting out the same way again. She tries to take notes but ends up getting everything all messed up. I am a junior in the honors program and I get an aide who would be better suited for taking notes for a first or second grader. This really stresses me out when I need to be focused upon my grades instead of trying to decipher the notes. This is why, when I am in school, Brenda takes notes so I know what the heck was discussed during the class and can go back and study from that.

Journal 1: 9/17/04

B4SMA

This year I started an organization for newly diagnosed children with SMA, Spinal Muscular Atrophy. I started it in April of 2004. I started my organization because Brenda, my caregiver, had made me too many quilts. Brenda learned to quilt a few years ago and by April she had made me more quilts than I needed.

So that she could continue to enjoy quilting we had decided that we were going to help a friend who had an organization that gave blankets and toys to children with SMA. Brenda told her mom about this organization and her mom decided to help too. When Brenda came home from Easter vacation she had several quilts that she and her mom had made. When we contacted our friend she informed us that she was no longer going to be doing her organization. We were unsure what we were going to do with so many blankets, so I decided that we should start our own organization, B4SMA (Brenda came up with the name). B4SMA stands for Blankets for Spinal Muscular Atrophy kids.

Our first blanket was sent to a little girl in Vermont. Her mom e-mailed us the day they received the blanket, which was a Monday. She also sent us a picture of her daughter with the blanket. When we woke up Tuesday morning there was an e-mail from the little girl's mom saying she had passed away. Her mom, in honor of her daughter, made me a photo album so I can keep all the pictures of the kids that are sent blankets in a safe place.

We have now sent out about 20 blankets to kids with SMA. With each blanket we send two or three beanie babies. Besides Brenda and I, we now have Brenda's mom, Aunt, and Grandma crocheting, knitting, and quilting blankets for B4SMA. We also have a few others who want to volunteer. We hope to have more volunteers help us, as B4SMA grows. Once families receive their blanket all we ask of them is that they take a picture of their child with the blanket. I hope one day, when there is a cure for SMA, there will not be a need for anymore kids to receive blankets from us, but until that day I will continue to send blankets.

http://www.caringbridge.org/ny/b4sma