The following articles have NOT all been written by me.

The following article is from International Ventilator Users Network (IVUN) .

I hope you enjoy it!!!!


 

Being a Teenage and Living With a Ventilator
(tweetyroll88@aol.com)

People call me Margaret or Marg, MJ, Margaret Jo, or even Miss Maggie. Now 17, I was born January 8, 1988, with spinal muscular atrophy (SMA) type I. The most severe type of SMA, it weakens all muscles, including those for breathing, eating, sitting unassisted, and limits most of my functional movement.

John R. Bach, MD, started me with a bilevel when I was 8, and I now rely on the LTV® 950 (Pulmonetic Systems, Inc., www.pulmonetics.com), to support my weak breathing muscles. I use a mouthpiece during the day and the Mirage® Vista™ (ResMed Corp., www.resmed.com) at night. I also use the CoughAssist™ (J H Emerson Co., www.coughassist.com) on a daily basis to help clear the secretions from my lungs. Then there are four nebulizer treatments daily along with The Vest® (Advanced Respiratory, www.thevest.com), which help to keep my lungs functioning "normally."

A great team of physicians (Drs. Bach, Wendy Proskin, Josh Needleman, and Colin Bethel) has helped me through any and all crises. Fortunately, they all follow Dr. Bach's protocol for noninvasive ventilation (NIV) management.

Using a wheelchair and a ventilator does not mean I am unlike other teenagers. I enjoy reading and writing e-mails, watching television, playing computer games, making websites (I currently have about six websites of my own), reading e-books, talking with friends on the phone or instant messaging, and making blankets for my organization, B4SMA, Blankets for SMA. I send out a blanket to children newly diagnosed with SMA. B4SMA is almost a year old, and I have sent out approximately 60 blankets.

I also spend a great deal of time writing. I wrote an article for Mary Beth's Beanie World for Kids, March 1999 issue, I used to write a bi-monthly column for the WOW (Winners on Wheels) connection newsletter, and I was recently published in Angel Times, a quarterly newsletter for families of people with SMA. My first children's book was published last year; I am writing my second.

As a high school junior, my courses include physics, precalculus, American history and government, English, and I just completed a semester studying forensic science. I like most of my teachers, even though I was only in their classrooms nine days before becoming a home-schooled student.

My immune system isn't strong, and it seemed that every time I went out in the winter, I instantly caught a "bug." To help prevent numerous pneumonias, I stay home. Now my teachers just send home the work they provide in school, and I complete it as I can.

In August 2006, I plan to attend an out of state college and major in computer sciences. My caregiver, Brenda, who has been with me for several years, is going to college with me.

I don't talk with many of my peers from school. High school has changed a lot of the people I used to consider friends. It is also difficult to connect with them because I don't attend school on a regular basis. I have met many great people through the Internet; some have become friends who will last a lifetime.

As I told a friend the other day, "My life is good. I am happy, though rarely healthy, and get to go just about any place I want to. I can't walk, I can't ride a bike, and I'll probably never be president. But with wonderful friends, supportive family, and God and my angels watching over me, I can do anything I set my mind to do."

Volume 19, No. 1, Spring 2005
Ventilator-Assisted Living

The following article was written for Mary Beth's Beanie World for Kids!

Enjoy!

The Courageous Collector ...
When I was diagnosed with SMA, the doctors said I wouldn't live past the age of three. I am almost 10 now and am doing great. My sister wasn't so lucky; she died when she was three." Welcome to the world of Margaret Purk. Although young in age, she has experienced more in her life than many of us ever will. Her energy, strength and will to live should set an example for all of us.

Margaret, her background ...

Margaret was born with spinal muscular atrophy (SMA), which was diagnosed at the age of 9 months. Individuals diagnosed with SMA [often] have a life expectancy of 2 years or less. It is a neuromuscular disorder that requires both parents to carry the gene before it can be passed to their offspring. Margaret's parents, Tim and Beth, did not realize they each carried the SMA gene when Beth became pregnant with Margaret. At the time that Margaret was diagnosed, Beth was already six months pregnant with their second child, Emma. Emma was also born with SMA, which was diagnosed at 3 months of age. In June 1991, Beth was killed in a car accident. Although his family was a great support system for Tim, he needed live-in help to care for his two young daughters, ages 3 and 2. In September of 1991, Brenda came to live with the Purk family and to care for the children. In March 1992 Emma passed away at home while taking a nap, after a series of hospitalizations.

Margaret, her activities ...

Just one of Margaret's extraordinary gifts is her ability to write. Unable to physically write, she dictates her words and Brenda types them for her. Margaret's writings have been featured in many publications, including the Chicago Tribune, Barbie Bazaar and Team Rehab Magazine. She has also written short stories and had them published on line on such sites as Winners on Wheels and America Online's Beanie Boards. But please don't think Margaret spends all day on the computer. She is one very active girl! Not only does Margaret love to read and write but she is also actively involved in both Girl Scouts and Winners on Wheels, a scouting group for boys and girls in wheelchairs. In Winners on Wheels, Margaret has earned numerous badges for such activities as hockey, cooking and puppetry. Margaret also earned 40 try-it badges in Brownies while at home because of illness. Traveling is another favorite activity for Margaret, who recently visited Disney World in Florida, courtesy of the Starlight Foundation, and kept a journal of her experiences that totaled 29 pages.

Margaret and her collections ...

Margaret began her love of collecting early. Being a girl, naturally her first collectibles were dolls, specifically Barbie and Madame Alexander dolls. When she was four, she began to collect Noah's arks and nativity scenes as well, but nothing can top her Beanie Baby collection! Margaret met her first Beanie Baby in miniature during the McDonald's Teenie Beanie campaign. She really caught the full-scale Beanie bug when she traveled to Ohio to visit her grandmother and received eight different full-sized Beanies from a family friend. Beanie Babies proved to be perfect for Margaret. They are small, soft and easy for her to hold in her hands. In addition to Ty Beanie Babies, Margaret now also collects the Disney Beanies, Bean Sprouts and anything else small and lovable! One of Margaret's favorite writing topics is about Beanie Babies. She also loves to play with them and dress them up. Congo the doctor and Gracie the nurse are two of her favorite Beanie characters.

Margaret on line ...

Brenda and Margaret have been on the Internet for about a year, scouring America Online's Collecting Boards for all their favorite collectibles. Naturally, when Beanies entered Margaret's life, she wanted to learn more and began reading the AOL Beanie Baby Boards. In May 1997, she began entering various Beanie Baby writing contests (what else!) that were conducted on the boards and became well known to many who frequent those boards. After a few tries, Margaret was the winner of the writing contests being held and the contest sponsors dubbed her the "Ty Beanie Baby Poster Child" and became her "secret pals." When other collectors learned of her personal situation, they "adopted" her as well.

In early November 1997, Margaret was hospitalized. She had back surgery to remedy some of her problems from scoliosis. During the operation, she had titanium rods and wires placed in her back, and her spine was fused with cadaver bone, from her neck down to her pelvis. Doctors warned the family that this surgery could be very debilitating to Margaret. There was the possibility that she might never come off the ventilator and that her hospital stay could last as long as three weeks. Margaret brought four very special Beanies with her to the hospital: Goldie, for her to strive to reach her gold medal; Lucky, for good luck; Spooky, to chase away the bad guys and Baldy, because he stands for her freedom and that is what she wanted from the hospital. She amazed everyone by being removed from the ventilator after only 15 hours, and she was released from the hospital after only five days. The back surgery has removed pressure from her right lung, which has eased her breathing, and she not suffered any colds. Prior to the surgery, Margaret had frequently suffered from pneumonia and had been restricted to spending only one hour a day at school.

While Margaret was in the hospital and recovering at home, her "special pals" from the AOL Boards arranged to have Beanies and other small gifts sent to Margaret from all over the country. For nearly 2 months, Margaret received packages every couple of days. These gifts and the enclosed prayers and words of encouragement helped Margaret through a very difficult period in her young life. She is now strong enough to begin attending school full time once again.

I have personally only known about Margaret for a short period of time, but she has touched my heart with her words and her positive outlook on life. She has always strived to be a winner ... know she's won my heart! I think Brenda said it best: "It's hard to describe Margaret in just a few words. She is one brave and loving child. It makes you proud to know her."



The following article was published in Sound Shore Review,
February 20, 1999

Hope you like it!!

 

Kid Crusader: 11-Year-old Margaret Purk fights for rights of the handicapped

Margaret Purk is glad that Caldor is going under. The Rye Brook resident had been fighting for the store on Boston Post Road in Port Chester to become
accessible to large wheelchairs. Its bars out front, which hold carts in, also hold some handicapped people out, although entrance in available through a side door. No amount of calls or letters on Margaret's part could open that front door.
Margaret has written a number of letters to a variety of local institutions
that are not completely handicapped-accessible -- from stores to schools to
the Port Chester Public Library.
She has become a local activist for handicapped people, and she's 11.
The reason Margaret fights for the rights of handicapped people is that she
herself is disabled. She has never walked. Born with Spinal Muscular Atrophy
(SMA), she gets around via power wheelchair. Due to a gene mutation, her muscles will never grow beyond their infant size.
A fifth-grader at Port Chester Middle School, Margaret has taken it upon
herself to gain access to all floors of her school, the second floor of the library (where the kids' books are) and Caldor (though this last problem seems to have solved itself).
At school, Margaret can't travel from floor to floor without going outside,
and can get into the building only through certain entrances. "The school's not really accessible," she says, "and the elevator's not big enough for my wheelchair."
There is no aide at the school for Margaret's special medical needs, so she
brings her caregiver, Brenda Hanson, to school with her. She spends only a
half-day there because the air becomes too warm for even her plug-in ventilator to counter. "The school gets too hot," she says. "It's very stale and it makes it hard
to breathe."
Back home, where she lives with her father, Timothy, who works for Macy's,
and Brenda, Margaret rests and does her homework, which she usually enjoys.
"Homework is sometimes fun," she says. "But I don't like language arts
because I have to write 'I' stories and I like to write pretend stories."


Beanie Buddies

Therein lies this activist's alter ego -- your typical 11-year-old Beanie
Baby fiend. In addition to owning close to 400 bean bag toys, which she
stores on "bean poles" her grandfather helped her make, Margaret also writes
fantastic stories about her Beanies. "I like them because they're easy to pick up and hold," she says, adding that her favorites are Spooky the ghost, Lucky the ladybug, Baldy the eagle and Goldie the goldfish.
These are also the four she brought with her to the hospital when she had
spinal fusion surgery last year. She explains, "Spooky kept the bad guys and
the germs away, Lucky was for good luck, Baldy to be free of the hospital, and
Goldie to strive for my gold medal."
They must have all done their job.
"Her doctor said it could be as little as 10 days or up to two months in the
hospital," Brenda says. "I was out in five days," Margaret says. During her recovery, she received between one and 15 Beanie Babies a day for a month -- many from people she had never met.
Beanies have also earned Margaret her first writer's paycheck. Her byline
can be found in the March 1999 issue of Mary Beth's Beanie World for Kids. Other tales and drawings of Beanie Babies have won Margaret approximately 100
Beanie prizes over the last two years. She enters the contests online.

Ahead of the pack

Wheelchair or not, this girl is more technologically advanced than most
people you'll run into. She uses an on-screen keyboard with a mouse, or a
voice system that translates spoken words into written. She has two of her
own Web sites, makes "Beanie friends" online and picks up on new technology in
a flash. "My science teacher was teaching a program, and I got it in 15 minutes," she says. "The other kids, it took about two weeks."
Margaret also wrote for Barbie Bazaar about the wheelchair Barbie. "I said it wasn't good because it didn't have brakes on the wheelchair or a seatbelt," Margaret says. She also writes a regular Dear Abby-type column for the Winners on Wheels scouting group's newsletter.
For an 11-year-old, Margaret is well-equipped to help other children with
their problems. In addition to her illness, which keeps her out of school many days and can turn a cold into pneumonia very easily, Margaret has faced much in her short life. Her mother was killed in an automobile accident in 1991, and her younger sister, who also had SMA, died the following year.
Despite the hardships she has faced, Margaret lives her life in an enjoyable
fashion, effecting positive change along the way -- and hopefully having a little fun.
She talks of the new wheelchair she has on order, one that will double the
4-mph speed of her current chair, turn on her radio and TV and hold a battery-
powered ventilator. She recalls her first test-drive in the new chair, when
she left yet another able-bodied person in the dust. "I had it at a high speed," she says. "I was going straight down the hallway and the guy couldn't keep up. He was running after me."

The following short story was written by me for my Computer Quint in December of 2001.

While the names and places may be similar to people and places I know, it is not a reflection of any one

person or place. Enjoy!

Angel Girl
 

This is the true story of Lily Stanger. Lily is a fourteen-year-old girl. Lily lives in a small town in Iowa.
One Sunday afternoon Lily was walking home from Sunday School, when suddenly a bus came speeding down the highway. Lily tried to run but it was too late. Lily was thrown across the street and into a garden. She lay very still; not knowing if she was dead or alive. She tried moving but she couldn't. Someone came running over.
The next thing she knew she was being placed in an ambulance. She heard people's voices that she didn't know or care to know. She noticed something. She saw people sticking her with needles, but she didn't feel them. How odd, she thought. She'd had shots before and she knew that something must be wrong. People were calling her name but she couldn't answer them. She felt strange, kind of like she was floating. She was very tired.
Lily floated up, up, and away. She wasn't sure what was happening but she wasn't scared. She saw something strange. It was a beautiful lady dressed in a pale blue suit, glowing. She whispered Lily's name over and over.
"Lily, Lily, come here, Lily!" she whispered.
"Where?" Lily asked. "I don't understand why are you calling me? Who are you?"

"I'm Marie, the greeter," the lovely lady said.
"The greeter? Of what?" Lily was very confused. Where was she and why was she here?
"I know you are confused. This is a confusing place, especially when you first arrive here."
"Here? Where's here?"
"Oh! Dear, you don't know where you are?" Marie looked very angry. "Jacob! Where are you?"
A small man appeared out of the shadows. He was dressed in all black and had blue hair.
"Why, in God's name, didn't you tell her? Excuse the pun."
"Well, umm, well, I umm, umm, well, I umm, umm, well, I umm…I forgot?" he stammered.
"You what!?!? How could you forget something so important?"
"I'm sorry," he said. He looked very pitiful to Lily.
"Pardon me, but aren't I the one who needs the question answered?" Lily was getting very angry because it was almost time for dinner. Her mom was making chicken and it was Lily's favorite.
"I'm sorry, really I am! I just can't believe you are here."
"Whoa, whoa! I still don't know where I am!"
"Oh yes! I'm sorry, but I have to go." Marie quickly ran off.


"Hello, in case you didn't know, I'm Jacob! I'm the teller!" he said with a smile. "I've been waiting for you! The reason I'm called the teller is because I'm here to tell you where you are and where you're going."
"Where am I?"
"You are in the Gathering Place. The place between heaven and earth!"
"The Gathering Place? Why is it called the Gathering Place?"
"I'm really not sure, but after people die they must stay here until they are ready to go to heaven."
"Oh! I'm not ready to go to heaven, but I wasn't ready to leave either. Am I dead? Oh, PLEASE say I'm not!"
"I'm so very sorry. Yes, you are dead."
Lily began to sob. Why, she thought, I wasn't ready. I had so much to live for.
"Don't cry! Please, I think you will like it here." Jacob hugged her and helped her to a bench.
Suddenly, Lily noticed that this place was beautiful. She saw fountains, trees, flowers, and streams. It looked very much like the pictures of heaven that she had seen in her painting book.
"I think that now is a good time to show you around. Follow me please." Jacob pulled her up and started walking.
As they walked along, Jacob pointed out various buildings in the village. To the right was the post office and to the left was the shopping center.

"Why do you have a post office?" Lily was very puzzled. "If we're in heaven, why do we need a post office?"
"How do you think angels send letters to their loved ones?" Jacob was laughing.
"I've never gotten a letter from an angel."
"Well of course not! When angels send letters, their loved ones receive not a written letter, but a feeling."
"A feeling? What kind of feeling?"
"A feeling such as a hug or a maybe a bird chirping or perhaps a whisper from the wind."
"I understand."
"That is a letter from an angel. Do you remember the day your grandfather died and you felt a hand on your back? Well, that my friend was an angel letter!"
"Oh my! I never told never anyone about that."
"Well, I must leave you now but I will be seeing you again soon." Jacob hugged her and pointed her towards the G-Lou Café.
Lily really wasn't hungry, but Jacob had said that owner of the G-Lou Café would tell her where to go next. As Lily entered the café she was suddenly over come with hunger. She noticed a sign that told her to seat herself and someone would be with her shortly. She found a booth near the window and settled herself in. As she waited she stared out the window. She saw a young girl swinging and a boy playing in the sand. She realized that she knew those kids; they were her brother and her cousin. She couldn't believe it!
"How may help you dear?"
Startled, Lily snapped her head around. "Oh, I'm sorry, you startled me!"
"How may I help you?" the waitress said rudely.
"Um…May I have a menu?" Lily was not sure how to act; she had always assumed all angels were nice.
"Here!" the waitress said gruffly.
"Thank you. I would like a chocolate angel shake with whipped cream."
The waitress walked away and Lily turned to the window again. Now she saw a different view. She saw her mother and father lying together on her bed. Lily silently began to weep. She had only been away for a few hours, but she already missed them terribly. The waitress came walking back with her shake.
"Here's your milk shake, girl."
"Thanks very much!" Lily tried to be polite.
"Are you ready to order? Yet?"
"No, please give me a few minutes more."
Lily quickly scanned the menu. She saw everything she loved, chicken, manicotti, ravioli, and carrot cake. Oh dear, she thought, what should I choose?
"Are you ready to order, now?"
"Yes, I'll have ravioli with the cream chicken sauce, please."


The food came in a few minutes. When Lily finished her food, she asked for the bill. Oddly the waitress told her that it was taken care of. Oh well, Lily thought. Then, politely, Lily asked for the owner.
"Hello, honey!" a tall slender woman walked up to where Lily was sitting. "I'm Sheila Packerd, I'm the owner of this place."
"Hello, I'm…"
Sheila interrupted her. "Oh, I know who are! You are Lily Stanger."
"Well, yes I…"
Sheila interrupted again. "Jacob told me all about you! You sounded just wonderful! Jacob just raved about you…I'm just the one to tell you about where you need to go next. Come with me, child."
Lily quickly followed Sheila. She figured that if Sheila walked as fast as she talked, Lily better start running. As Lily followed she noticed that people everywhere were eating or getting ready to eat. How odd, she thought, Lily knew that in her neighborhood not everyone ate at the same time. Then Lily remembered something, when she was outside the café she wasn't hungry at all but the instant she walked through the door she was starving. Maybe, she thought, that was the way it worked around here. You never felt hungry until you entered a place that sold food. By the time Lily snapped out of her daydream, she was standing in front of a very, very tall building. The sign on the building said "R.T.B.L.T.S. Home for Children".
"Sheila, what does R.T.B.L.T.S. stand for?" Lily asked.

"R.T.B.L.T.S. stands for Rita and Tally's Bacon, Lettuce, and Tomato Sandwiches." Sheila stated.
"Ok, but why is it called Rita and Tally's Bacon, Lettuce, and Tomato Sandwiches?"
"Rita and Tally's favorite sandwich is…"
This time Lily interrupted Sheila's sentence. "BLT's?" Lily said.
"Yes, that's it! Now, Lily, this is where you are going to spend the night."
As Lily and Sheila entered the building, Lily noticed that this place looked very much like a hotel she once stayed in. It was beautiful. To Lily's right was a restaurant called Chez Lez, to the left was a swimming pool. She saw many kids, some of them waved to her. Sheila pointed to the kids she knew and named them.
"There's Lulu, Mae, Joan, Joshua, Andrew, Sara, Sharnice, Sharetta, and Missy." Sheila pointed to each in turn.
Sheila took Lily to the counter. A small woman appeared beside Lily and took her hand. Lily wasn't frightened at all. Sheila told the woman who Lily was and where she came from. The small woman took Lily up the stairs and down a hall. The woman chattered on and on, but Lily was only half listening. She was paying attention to all the heads that appeared from behind the doors on either side. The woman stopped in front of a door numbered 398.
"This is where you're going to stay." The woman said.
"Alright, thanks!"

"Dinner's at five and you will be expected to attend bible lessons tomorrow."
"Hmm, alright! That sounds great!" Lily said. "I guess I'll see you at five!"
Lily stayed at the R.T.B.L.T. for three weeks before she saw Jacob again. When Jacob arrived, Lily was just getting ready for bible lessons. Jacob took her outside and they sat on a bench together.
"Today, Lily, you have been requested to visit the most important person in the Gathering Place." Jacob sounded very strange.
"What? Who? Are you alright, Jacob?"
"Yes, I'm fine. The person you are going to meet is the Wingdale Wing-giver."
"Ohhhhh…Does that mean I'm getting wings?''
"Yes. Well no…you are going to learn what it means to earn your wings. Please follow me and I will explain." Jacob stood up and started walking. "The Wing-giver is the most important person here. She will evaluate you and see if you're ready to be in heaven and if you are ready for wings."
"Do you think I'm ready? I have believed in everything Saint Mary has taught me, and she said that I'm a very good student. I love reading the teen bible." Lily was honestly nervous about meeting the Wing-giver.
"I'm sure you are ready. I must go now. The house that is blue with a green door is where she lives. Good luck, Lily, and I'll see you when you finish." Jacob gave her a quick hug and ran off.
Lily rapped lightly on the door. A tall woman with shocking purple hair opened the door.
"Hello there! You must be Lily! She's been expecting you. By the way, I'm Mummsly. I take care of Ms. Wingdale." The woman said slowly.
"Yes, I'm Lily. I hope I haven't kept her waiting too long. Have I?" Lily knew that if she had, it might ruin her chances of getting her wings. She had learned that from Saint Mary, the bible teacher.
"Oh, no! You are on time. Please follow me up to the bedroom."
As Lily entered the beautiful house, she saw all the furniture had wings of some sort on them. The dining room chairs had wings as the back of the chairs. Lily peeked in the living room and saw the armchairs were covered in butterfly wings. Up the stairs, Lily and Mummsly turned left and entered a grand room. Lying in the bed, was small, frail woman. She lifted her hand and beckoned to Lily. Lily walked to the bed and sat in the wing-shaped chair. Mummsly left the room and shut the door behind her. Ms. Wingdale stared at Lily for a long time.
"Come here child." Ms. Wingdale said softly. "Come sit on the bed so I may see you better."
Lily moved to the bed. She sat quietly and patiently. It seemed like an hour before Ms. Wingdale spoke again.


"You are a beautiful child, Lily. You miss your family and friends. You are ready for the truth about your death. You were killed by a young man, who was drinking. He never stopped and now is on the run from the police. The young woman
whose yard you landed in was just planting flowers when she found you and called 911. She and your mother are friends and talk about you all the time." Ms. Wingdale reached towards the dresser and pulled out a picture frame. She handed it to Lily. Lily stared at the picture frame and saw her mother and a woman she assumed was the young woman who found her.
"Lily, could you please give that back to me."
"Please let me look a little longer?"
"No, it's time to go. Please give that back to me."
"Go? Go where?"
"Please get Mummsly and I will explain as we go."
Lily ran down the steps and got Mummsly. Mummsly, Lily, and Ms. Wingdale went down the path outside the house. Ms. Wingdale led Lily to a cliff.
"Lily, look down there and tell me what you see."
Lily looked down and saw many angels, all with wings. She told Ms. Wingdale what she saw.
"Lily, this is going to sound strange, but, jump off the cliff." Ms. Wingdale said.


"Jump? What do mean jump off the cliff?" Lily was not going to jump off a cliff even if she was already dead!
"You heard me! Jump off the cliff."
So, Lily jumped. She fell for a long time. Then, suddenly, she started flying upward. It was amazing! She turned in circles again and again. It felt wonderful, she felt so free!
"Lily, please come back here." Mummsly was calling her back to the cliff. She flew back and landed gracefully on a rock.
"Lily, now that you have wings, you must receive your assignment." Said Ms. Wingdale.
"Assignment? You mean like Marie is the greeter and Jacob is the teller?"
"Yes, exactly! You, my dear, are going to be Angel Girl!"
"Angel Girl…I like the sound of that!"
Ms. Wingdale took Lily's hand and said, "Now you must go to God".
"Yes," said Mummsly "God's been waiting for you."
"I believe I'm ready!"
Lily and Ms. Wingdale flew into the sky.
 

 

The following was written for my Creative Writing class in 2005

Enjoy!

 

I chose "The Dream Quilt" by Forever In My Heart as my source. It is a cross stitch pattern that I received as a gift this year. I chose "The Dream Quilt" cross stitch for several reasons. The first reason is because of the words that are in the pattern; Dream, Imagine, Wish, and Believe. Those are words that are very powerful. When I see or hear those words I automatically think of the endless possibilities that the words stand for. I also chose "The Dream Quilt" because of the colors used in the pattern. The colors are vibrant and beautiful, just like the imagery associated with the words. When most people think of the word dream, for example, you do not think of blacks or browns but vibrant colors like reds and pinks. For this reason I think that "The Dream Quilt" by Forever In My Heart is the perfect source for me to respond to. I like to think that if I were a color, no one would ever say I was black or brown but perhaps vibrant shades of blue, like the summer sky, or yellow, like the afternoon sun. These are just some of the reasons I chose "The Dream Quilt" for my source.
"The Dream Quilt" has inspired me to do many things. Because of "The Dream Quilt" I decided to create my own graphics and logos to be put on clothing. http://www.cafepress.com/b4sma/827865 I will use the money from the sale of the clothing to support my organization. I have also decided to write a poem about the words used in "The Dream Quilt". I hope the poem, along with the clothing, will show the emotions that I feel when I look at "The Dream Quilt".

 

Dream of growing old,
Imagine no illness,
Wish for warm, sunny days and cool, starry nights,
Believe it will be all right.

Dream of a caring world,
Imagine we are all equal,
Wish that could be true,
Believe it could be soon.

Dream that tomorrow will be better,
Imagine that you would help,
Wish you would even try,
Believe some day you might.

Dream there would be no difference between your strength and my weakness,
Imagine you would see me for me,
Wish you would look past my different way of moving,
Believe you might just see the truest parts of me.

Dream tomorrow will come,
Imagine the day will start,
Wish to see you soon,
Believe you want to see me too.


 

Two original poems by me. Written in September 2005.

Twinkle, twinkle, little star,
How I wonder what you are.

Have you been there all these years,
Watching me grow and change from year to year?

Up above the world so high,
Like a diamond in the sky.

I dreamed and wished on you each night,
Hoping to see your glorious light.

Twinkle, twinkle, little star,
How I wonder what you are!

I have changed but you have not,
Some day I hope to reach the top.

 

Star Light Star bright,
The first star I see tonight,

Little star above the world,
I look to you for guidance and light

I wish I may, I wish I might,
Have the wish I wish tonight.

I've wished on you for years and years, hoping you would take away the tears,
But now I'm grown and must move on knowing only I can keep me strong.
 


 

 

I recently finished a short story for my Creative Writing class. I thought some of you might enjoy reading it.

While the names and places may be similar to people and places I know, it is not a reflection of any one

person or place. Enjoy!

 


Learning about Life

By: MJ Purk, October 2005


The summer wind blew through the open window as Laura stared blankly down the street. She knew that today would be different, but how, she didn't yet know.
The day had started simply enough. Laura had helped her mother, Pam, in the garden and then showered. But as she stared out the open window, Laura knew that everything was about to change.
Laura and her mother had recently moved to a small town in Mississippi. Laura's mother had been offered a job at the local pharmacy and decided to move earlier that August. Laura had not been thrilled when her mother announced that they would be moving from their town in rural Indiana to another small town in Mississippi. Laura had begged her mother to consider moving to Kansas City, knowing that her best friend, Kamy, had recently moved there. But Pam flat out refused, stating that she hated city life and besides, it was time for Laura to make new friends and Mississippi was the perfect place to start.
Laura was still fuming about the move as she stared out the window of her new bedroom. Suddenly a black truck pulled onto the street. Laura watched as the truck made its way down the street. The truck looked vaguely familiar to Laura but she couldn't place it. Finally, when the truck pulled into their driveway Laura recognized it as the truck that Kamy had received for her sixteenth birthday.
As Laura raced down the steps, she could hear her mother coming in from the backyard. Laura ran passed her mother and out the front door. As Kamy climbed out of the truck, Laura could tell something was wrong. Kamy walked to the passenger side of the truck, opened the door, and took out a baby.
"A baby?" Laura thought, as she walked toward Kamy.
Laura was in shock. This baby that Kamy was holding couldn't be her baby, could it?
"Kamy!" Laura exclaimed, "What are you doing here?"
Kamy just walked toward Laura and then hugged her, tears streaming down her face. Laura led Kamy inside, telling her mother not to ask questions right now.
After getting Kamy and little Maya, the baby, settled, Laura set to find out what happened. Kamy explained what had led her to Mississippi, eight hundred miles from home.
"The reason we left Indiana is where the story starts." Kamy said "As you both know, Daddy was a very prominent person in our town, and when he found out that Stephen had gotten me pregnant, he insisted we move rather than be mocked by the busybodies of the town. So with only me, Mama, and Daddy knowing I was pregnant, we moved to Kansas City."
Laura stopped Kamy there, questioning why Kamy had not told her or Stephen she was pregnant.
"Maybe we could have helped you!" Laura said, trying to hide the anger in her voice. "The least you could have done was told us."
Kamy didn't answer Laura, she just continued with the story.
"After we moved, Daddy made me promise to not tell anyone from home about Maya, or he would throw me out." As she said this, she stroked Maya's head. "I continued doing school work but I didn't go to school. Daddy was afraid what people might say if they found out that a preacher had let his teenage daughter get pregnant. So I stayed at home all the time except when I went to the doctor. On July 9th, I gave birth to Maya with only the nurse and doctor there."
At this point in the story Pam began to sob. She had never liked Kamy much but she couldn't believe anyone would leave their daughter alone to give birth.
"Don't cry, Mrs. Shine." Kamy said, handing Maya to her. "This beautiful baby is the best thing in my life. I should continue with the story though, otherwise I could talk about my 'little bug' all day long."
So on she went with the story.
"After I came home from the hospital with Maya, everything seemed to be great. Daddy had set up a bassinet in my room and had bought some clothes for Maya. The Saturday after we got home, I woke up to find that Maya wasn't in her basket. I panicked. I ran downstairs to find Mama handing Maya to a woman. I yelled, 'That's MY baby!' but no one was listening. After several minutes of my screaming, Daddy finally came in. He explained that he decided that the best thing we could do was put Maya up for adoption."
Pam and Laura gasped.
"What do you mean they wanted to put her up for adoption?" Laura asked, still in shock.
"Exactly!" said Kamy. "I couldn't believe it! So, without another word, I waited until Sunday, packed the truck while they were at church and began the drive here."
Laura and Pam both sat in shock. They could hardly believe that Kamy's family, the nicest, most giving people, had done this to their own daughter. Pam stood up and walked over to the window.
"What can I do for you?" she asked, turning towards Kamy.
"I don't know but…" Kamy's voice trailed off, leaving them all to wonder what really could be done.
"Then, it's settled." Pam said suddenly. "You and Maya will live with us until you decide what you want to do."
Laura jumped to her feet and ran to hug her mother.
A few months passed uneventfully. Kamy and Laura attended school and even found someone to watch Maya during the day. Pam continued to work at the pharmacy and took a second job to help cover the costs of two extra people. Everything was far from perfect but life was good.
One Saturday afternoon, Pam was holding Maya when Maya began to cough. Pam patted her on the back trying to break it loose, whatever it was. It just wasn't coming out. By this time Maya was crying, which was making everything much worse. Pam yelled for the girls to call 911 because Maya was turning blue.
Maya was admitted to the hospital with pneumonia. The doctors were baffled because she couldn't breathe well even with oxygen. They ran several tests and poked and prodded Maya for two days and found nothing. Nothing until one of the doctors suggested testing for a form of Muscular Dystrophy called Spinal Muscular Atrophy. Kamy, Laura, and Pam all researched Spinal Muscular Atrophy. The only thing Kamy could see was "Number one genetic killer of children under the age of 2". Over and over she saw that statistic. There was no cure, no treatment even.
"Nothing can be done" Dr. Krowfield said. "For these babies, you just love them while you have them."
"There has to be something we can do, there just has to be!" Laura said. She was determined to find something that they could do for Maya. Then, after hours of scouring the different websites, she found something, the thing that might make a difference for Maya.
There were doctors who were giving people hope. Granted, what they were doing wasn't working for everyone, but it was somewhere to start. The protocol was called Non-Invasive Ventilation or NIV and neither Laura nor Pam had ever heard of a lot of the machines that were used. Kamy was rightfully nervous of the machines.
"What if Maya doesn't like the machines? What if, like Dr. Krowfield said, it blows her lungs out? I don't think I want to do this."
"There are tons of babies using this NIV stuff." Laura said, pulling up a website called Our-SMA-Angels. "Look at all of them!"
"But that one died even though they used that In…InEv…InEvsufficator thing." Kamy said.
"In-ExSufflator" Laura corrected. "But wouldn't you do anything to have Maya for even just one more day?"
"I don't know what to do!" Kamy shouted. "It's not fair!"
Laura and Kamy sat for hours just crying and talking and deciding what to do for Maya. It wasn't going to be an easy decision but Kamy knew whatever decision she made, she would have to live with it.
After five weeks in the hospital, Maya finally was able to come home. She was a different baby now. She was unable to sit, hold her head up, or even drink from her bottle. Before they left the hospital, Maya had a feeding tube inserted through her nose. Kamy had opted to wait to do the permanent tube into Maya's stomach. After an e-mail conversation with another SMA child's mother, Kamy had decided to try the NIV machines.
That was easier said than done. None of the doctors in Mississippi would prescribe the machines. So, Laura called several doctors out of state and finally got one to agree to prescribe the machines for Maya.
The first few nights after Maya got the machines were torture for Kamy. Maya would cry and cry until she finally fell asleep. By the third night, however, Maya began to laugh and coo whenever Kamy got out the mask for the In-ExSufflator machine.
"It's amazing!" Dr. Krowfield said, when they took Maya for her check up. "I've never seen a baby like these machines before!"
Maya started to grow and thrive. A few weeks before Maya's first birthday, Laura found out that there was going to be an SMA fundraiser in their old hometown in Indiana. Laura showed the information to her mom and they decided that it would be the perfect way to celebrate one year of life. Pam gathered all the information and e-mailed the fundraiser's organizer. They told Kamy the day they were to leave where they were going. She was excited and nervous at the same time.
"Are you sure that this is a good idea?" Kamy said, as they pulled into the parking lot for the fundraiser.
"It'll be great!" Laura said, starting to get out of the car.
As Kamy lifted Maya out of the car, a woman came walking over to her.
"Hi, my name is Sarah and that is my son, Charlie. He has SMA type I." She said grinning.
"Oh! Hi, I'm Kamy and this is my daughter, Maya!"
In that instant Laura realized that she was right when she thought her life was going to change forever less than a year ago. Even though everything had changed, everything was going to be okay.

 

 

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