Kendra
Gottsleben
1984 -
Social media coordinator, University of
South Dakota
Sanford School of Medicine
Kendra Gottsleben
Kendra Gottsleben's
life is defined by her positive outlook and success in overcoming
obstacles, not MPS - the rare genetic condition she was born with. A 2010
Augustana graduate, Kendra works as a special projects coordinator within
the Center for Disabilities at the Sanford School of Medicine. Her first
book, "Live, Laugh, Lemonade: A Journey of Choosing to Beat the Odds" is
currently at the printer.
Whatever
Happened To: 'Live, Laugh, Lemonade'.
Kendra Gottsleben continues to
squeeze life’s lemons until not one more drop of juice can be wrung out of
them. That’s why she titled her first book, which is now at the printer,
“Live, Laugh, Lemonade: A Journey of Choosing to Beat the Odds.” “I would
say it’s inspirational but kind of an autobiography,” Gottsleben
says. “To someone it might be a straight-up autobiography, to someone else
it might be more an inspirational memoir. It’s me talking about the things
I’ve gone through in my life and how I’ve chosen to squeeze those lemons.”
Gottsleben,
who shared her story in the July 19, 2011,
Argus Leader,
was born with the metabolic disorder mucopolysaccharidoses. The enzymes
needed to help build bone, cartilage, tendons, corneas, skin and
connective tissue function much more slowly than they should. Her
variation - MPS Type 6 - allowed her to grow to only 40 inches tall. Her
corneas are cloudy, although she has vision, a heart valve leaks and she
uses a motorized chair.
But
Gottsleben, social media coordinator with the Sanford School of
Medicine/USD Center for Disabilities, views her disabilities as nothing
more than speed bumps. The Vermillion native says that in the months since
she spoke at a TEDx Sioux Falls conference, her life has changed. “I’ve
been nominated for the Tribute to Women at the YWCA,” she says. “I feel
more confident than I already did. I feel like I’m accomplishing way more
goals. I’m checking them off my list. I’m really at a happy point in my
life right now.”
Gottsleben,
whose book is being printed at AlphaGraphics in Sioux Falls, undergoes
weekly treatments, receiving an infusion that takes up to six hours to
complete. She is trying to decide how many books to order, wavering
between 500 and 1,000. “I didn’t write the book to become famous, and if I
have books left over, I have books left over,” she says. “But when I think
of what I could potentially do, I think (1,000) would be OK. I’d like to
get parents to see it.”
Gottsleben
has been asked to write a blog entry for the website of Handicap This!, a
live stage show hosted by two men, one who has cerebral palsy and one who
evolved from caretaker to friend. It’s part of a whirlwind life she wasn’t
expecting. “I’ve got to pinch myself every once in a while,” she says.
Article
by Jill Callison from the Argus Leader.
Live
Laugh Lemonade: A Journey Of Choosing To Beat The Odds
Dedication
This book is dedicated to
each and every one of my family members and friends who have given me
endless support and encouragement throughout my life – especially both of
my parents. Without my parents inspiring me to never give up, I could
never have achieved so many of my dreams and goals in life.
I also
dedicate this book to children, adults, and their families dealing with
life-threatening illnesses and/or disabilities. Obstacles are everywhere,
that’s a fact, but they should never limit you in life. Dreams and goals
are attainable with hard work. It’s been a passion of mine to help
encourage others because that’s what God would do. I have been blessed
with so many wonderful people and experiences in life and believe that one
should always be aware of those many blessings that one has been given.
To all
my readers, please remember to keep moving forward, to never give up, and
to make the BEST lemonade you possibly can out of the lemons that life
gives you!
k
Contents
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Foreword
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Prologue
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Chapter
1: How My Journey Began
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Chapter
2: What Makes UP "Little" Old Me
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Chapter 3: Parents that Never
Give Up
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Chapter 4: The Importance of
Extended Family
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Chapter 5: Bonds of
Friendship
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Chapter 6: Educators with
Impact
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Chapter 7: Coming to Depend
on Faith
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Chapter 8: Choosing to be
Different
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Chapter 9: Facing Challanges
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Chapter 10: Using Technology
to Fill the Void
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Chapter 11: Making Choices
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Chapter 12: Appreciating the
"Little" Things in Life
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Chapter 13: Dtermination,
Determination, Determination
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Chapter 14: Lending a Helping
Hand
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Chapter 15: Starting a
Movement
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Epilogue
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Acknowledgments
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Foreword
I first met Kendra in the
spring of 1985. She was five months old and I was in the fifth grade. Her
mom, Betsy, was one of my coaches for Olympics of the Mind. I’ve always
loved children, especially babies, and was at the age that I was eager to
begin babysitting. I began watching Kendra for short amounts of time while
Betsy ran errands and Dave, Kendra’s dad, was at work. I imagine they felt
more reassured leaving me alone with their precious little girl because my
parents lived just down the street. I cherished spending time with Kendra!
We always had so much fun together. I recall countless hours of building
block towers so Kendra could knock them down. Wow, how she would belly
laugh at that! I can still recite the first few pages of Dr. Seuss’s ABC
book from reading it numerous times. And of course, I still tease Kendra
about the time that she threw up all over my favorite sweatshirt.
Looking back, I remember
noticing Kendra’s curved back as an infant and vaguely recall being shown
exercises to help increase her flexibility when she was a toddler. None of
it really meant much; to me, Kendra was perfect. I used to bike all over
town showing her off to my family and friends. I conjured up any excuse I
could to visit her and couldn’t wait for my next time to watch her. Those
times became fewer as I entered high school and tapered off completely
when I went off to college. I still kept tabs on Kendra from a distance,
but it was not the same.
In
1999, I moved back to Vermillion to teach and my relationship with Kendra
was renewed. I was no longer just her babysitter; I was her friend, and
part of her family. Kendra was in eighth grade, but had already gone
through more than most adults do in a lifetime, as she will mention later
on in the book. At the young age of fifteen, Kendra was more like an old
soul. Surviving a near-fatal surgery gave her such a spiritual outlook on
life. She was wise beyond her years. Her faith in God was so incredibly
profound; it was almost as though she had a connection with Him that most
of us never experience, at least here on Earth.
One of my most treasured
memories with Kendra was her college graduation. I flew in to surprise
her, but it turned out to be the other way around. When she walked across
the stage to receive her diploma without assistance from anyone, I could
not control my tears of joy! I had seen her walk short distances, but she
spent the majority of her time in her wheelchair. I know her
classmates and professors were shocked too.
Anyone
who meets Kendra knows she has the kind of personality that draws you in.
Her laughter is contagious and her spirit is uplifting. Kendra’s motto is
to make lemonade out of lemons, and she lives by it each and every day.
Whether it’s someone unnecessarily taking up a wheelchair accessible
dressing room, a child pointing at her, or a waitress handing her a kid’s
menu at age 25, nothing bothers Kendra. She just shrugs her shoulders and
keeps on going, making the best lemonade possible. Her resiliency is
unending. It is with honor that I introduce her book to you.
- Jenny Chavers
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Prologue
Ever since I was a young
child, I have always loved writing about the exciting and troublesome
experiences I have had throughout my life. I have dabbled in fictional
stories, but those have never come very easy to me as a writer. However,
one story I wrote as a young child that I am rather proud of was called “A
Cure for Worry.” The topic of the book was advising the main character,
Mr. Ed, not to worry so much. This story was an assignment in seventh
grade reading class where we were told to write a story based on one of
Dr. Seuss’s books. I decided to stem off of Dr. Seuss’s book, “Green Eggs
and Ham,” illustrating and writing the entire book myself. Since that
seventh grade assignment, I have continued writing about my own life
experiences. I have always heard the saying “Write about what you know
best,” and I know myself and the incidents I have been through more than
anyone else would, which is what inspired me to write a book about
overcoming the struggles and challenges life has thrown my way.
I
began writing this book a few months before I graduated from Augustana
College in May of 2010. I was nearing the end of my college career and
would soon begin the next chapter in my life. I decided to take on a
longtime dream of mine—writing a book—and finally put it into action. I
chose to take the leap of faith and take on the challenge of actually
writing a book after a good friend of mine gave me the extra push I needed
to start the writing process. With a long discussion and an outline of
chapter topics, I found myself sitting at my computer and beginning to
write just a few nights later. My wish for you, the reader, is that you
also find someone who pushes you to obtain the aspirations you have only
dreamt about in life. Surrounding myself with individuals who were as
excited for me to write a book as I was to actually write it served as a
great motivator to make my dream come true. Whenever I had previously
thought about writing a book, I had always imagined that I would be older
than 27 years old. Although I may only be in my late twenties, writing my
story of overcoming obstacles just seems right for me at this point in my
life. As I travel down life’s path, I look forward to possibly writing
another book.
Who knows? Life is full of endless possibilities!
I
chose to write this book not because I wanted to become famous or make a
great deal of money, but rather to share my life’s challenges with others
and share how I stay positive with each and every challenge. Many people
have told me that I have an amazing, upbeat attitude, even with all the
barriers I have had to overcome throughout life, and that I need to tell
my story of never giving up. I know how difficult life can be as a child,
teenager, or young adult who has a medical condition or disability. If I
can make an impact on even just one person’s life, I would be honored. I
have been tremendously fortunate in that, even though I have
Mucopolysaccharidosis Type VI and am in a wheelchair, I have been able to
have a pretty “normal” life (for the most part). I have always tried to
live my life with a positive outlook, and with the notion that every
hurdle I have to endure teaches me something about myself and what
direction I need to take in my future. I have never wanted others to pity
me for my struggles because I do not pity myself. Having a “pity party”
for myself will never help me obtain all my ambitions in life. Everyone
here on Earth has barriers to conquer no matter who we are, whether we are
ablebodied or not, small or tall, young or old, rich or poor, bold or shy.
I acknowledge that we do need to allow ourselves time where we just need
to cry, scream, and get upset with some of those obstacles in life. But we
must not dwell on them for too long because thinking about them too much
does not aid us in reaching our individual goals and dreams. Life is full
of ups and downs for us all; that is just the way it is no matter how we
look at it. As long as we work through the ups and downs, we will be able
to accomplish something great!
k
Imagine
Imagine talking to
someone and not being able to look directly
into their eyes.
Imagine people kneeling
down while they are talking to you.
Kneeling down is kind of them, but it can also be an awkward and
uncomfortable situation for both of us.
Imagine wondering what
classmates are thinking of you as they sit
in class next to you.
Imagine trying to make
friends when most people your age are
unsure of how to act around you.
Imagine trying to be
independent in everything you do in life, in
a world that is not built for you, but rather taller people.
Imagine at times wanting
to be “normal.”
Imagine some people
thinking that you will never be able to
live on your own.
Imagine going to college
where there are no other small people
who you can talk with about life as a small person.
Imagine wondering one of
life’s many questions,
“Who will marry me?”
Imagine wanting to do
something that takes no time for a
taller person, but for you it takes ten more steps before it gets
done. Those ten steps are still the same whether the task
is enjoyable or not.
Imagine feeling nervous
around new people or the opposite sex
who really don’t know you or don’t understand that you are
not always shy.
Imagine wanting to show
the world that no one can say or do
anything that can hurt or break you.
Imagine even with all of
these struggles, worries, and feelings that
you are happy with your life and have accepted that “When life
hands you a lemon, you squeeze it as hard as you can, add sugar, and
make the BEST lemonade possible.”
Imagine that you know
that everyone has struggles, worries, and
feelings of nervousness in their life, so
you can’t dwell on what you can’t do or what you wish you could do. You
need to
take those experiences in life and use them to make the best out
of what your future holds.
Written during my first
year of college, fall of 2004
k
Chapter 1
“To accomplish great
things,
we must not only act, but also dream;
not only plan, but also believe.”
-Anatole France
How My Journey Began
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Early Challenges
I am told November 3,
1984 was a beautiful, warm day. On this particular day, beaming from ear
to ear, I graced my parents’ lives with my loving presence. They felt
blessed, as I was born healthy and strong at Sioux Valley Hospital (now
Sanford Health) in Sioux Falls, South Dakota. I was so healthy, in fact, I
weighed nine pounds and measured twenty-one and a half inches long. The
doctors, nurses and my parents saw all of my potential in life from day
one of meeting me. My day of birth gave no indication to doctors or my
parents that my future was going to be any different from any other child.
Little did my parents know, however, that this was only the beginning of
seeing doctors on a regular basis.
When I
was six months old, my mother noticed that I had a bump in the middle of
my back. This concerned her, knowing that other children my age did not
have the same bump. My parents decided to go to an orthopedist in Sioux
Falls. The diagnosis was that I had a kyphosis, an abnormal curvature of
the spine. The decision from that diagnosis was surgery at the age of
thirteen months. As parents, they told me seeing their little baby girl
being rolled away was heartbreaking and extremely scary. They had never
pictured having to give their child to a team of doctors and nurses at
such a young age. No parent ever imagines having to do that. Thankfully,
the surgery was successful and my parents hoped that would be the only
surgery in my lifetime.
Later, as I began
walking, my mother observed that I walked with bent knees and that my
fingers were rather short and curved. My parents made regular visits to
the orthopedist for many years after my surgery. When my mother asked
about my bent knees and stubby fingers, the orthopedist replied that some
kids’ knees and fingers are not straight and that it was not worth
worrying about. The comments from the orthopedist did not calm my mother’s
fears; she was a teacher and knew that not all kids had those
characteristics. She knew it was a sign of something wrong with my
physical development.
At the
age of four, the orthopedist realized that my mother was still extremely
concerned with my bent knees and short, curved fingers, so he suggested
that my parents take me to a local geneticist in my hometown of
Vermillion, South Dakota. Based on the abnormalities in my stature and
bone structure, the geneticist recommended doing a genetic test right
away. Prior to the official diagnosis, my parents were told there was a
good chance I would begin to regress intellectually and that I would
probably die before I would reach the age of ten. The words from the
geneticists were unimaginable and heartbreaking for my mother and father.
My parents looked at me each day following the diagnosis, refusing to
believe what they were told. They were trying to figure out how they would
handle watching their child slowly die year-by-year in front of them. I
was their one and only child, and the thought of me not being around was a
challenge for them to comprehend. I was a very active, humorous, and
fun-loving child. One evening my mother was crying in the living room
while she watched me play with my Cabbage Patch dolls. When I saw her
crying, I went over to her and said with a large smile and hug, “It is
okay Mommy, everything will be all right!”
The
month long wait for the official diagnosis was strenuous for my mother and
father. They received the call from the geneticist and were informed that
the unofficial diagnosis was wrong and I had been misdiagnosed. My
official diagnosis was a rare disorder called Mucopolysaccharidosis, Type
VI (MPS VI), also known as Maroteaux-Lamy. This new diagnosis would
provide better odds for me to live a somewhat healthy life. I would not
lose my mental ability, and there was also no age-related death sentence.
The month of living with the first diagnosis was tremendously difficult
for my parents, grandparents, aunts, and uncles. But apparently, even as a
little child, I knew that God had a greater plan for me. I was not
planning on leaving my parents and extended family any time soon. I still
needed to make my impact here on Earth. The geneticist told my mother that
it was estimated that about 1 in 215,000 births were affected with MPS VI
worldwide. She also stated that roughly 1 in 25,000 births would result in
some form of MPS in the United States. My parents wanted to know why I was
affected with MPS VI. She explained I received this condition from the
genes I inherited from both of them. Genes control all of our features,
including our height and eye color, among other characteristics. Some
genes that people inherit are considered “recessive.” A special type of
recessive gene causes MPS VI. The geneticist told them that when an
individual who is an adult carries the abnormal gene and marries another
carrier, there is a one in four chance with every pregnancy that the child
will inherit the flawed gene from each parent and will be affected by the
disease. Brothers and sisters who are unaffected by MPS VI have a two in
three chance that they will be carriers of MPS VI.
In a “normal” body,
mucopolysaccharides, or long chains of sugar molecules, are used in the
building of connective tissues in a body. “Saccharide” is a common term
for a sugar molecule, “poly” means many, and “muco” refers to the thick
jelly-like consistency of the molecules. Typically everyone’s body goes
through a constant process of replacing used materials and breaking them
down for removal. Children with Maroteaux-Lamy are missing the enzyme
Arylsulfatase B, which is necessary for cutting up the mucopolysaccharides.
The mucopolysaccharides that do not break down stay stored in cells in the
body causing progressive damage. I compare the build-up in my body to a
rubber cement like glue that builds up in my connective tissue and organs.
My cells do not cleanse themselves, which causes the gluey like substance
to build up and make my joints stiff.
Generally, babies show little sign of this disease right after they are
born. When they do begin to show signs of the disease it is typically not
until they are at least a year old. As children with MPS VI grow older,
and more and more cells become damaged, symptoms begin to emerge. MPS VI
presents a wide range of severities. It ranges from mild (someone only
slightly affected physically and having to walk with a cane) to moderate
(someone who needs to use a wheelchair but still has control of motor
functions) to severe (someone who is strongly affected physically and has
little control of motor functions). And at this point, my parents had no
idea where I would end up in the range of severities.
After
receiving the diagnosis, my parents learned that bent knees, short and
curved fingers, and the kyphosis discovered as a baby were all
characteristics of MPS VI. In fact, my surgery at thirteen months may not
have even been necessary. When I was around five years old my mother and
father were informed that I was going to probably have more surgeries and
other challenges in the future, but that as long as I had regular doctor
visits it would be manageable. They asked if there was a cure or treatment
for my condition; there was not. However, one geneticist did discuss that
research was being done on an enzyme replacement drug that could help me
live a healthier and longer life. My mother inquired as to how long it
would take for the enzyme replacement to be FDA approved. He had thought
in the next ten years. My mother has since shared with me that, as she
left that meeting, she left not believing I would ever receive an enzyme
drug treatment during my lifetime. The geneticist also explained two other
options were being researched – bone marrow transplants and gene therapy.
Gene therapy was and still is in the experimental stage. My mother and
father knew they did not want to try a bone marrow transplant because the
procedure was enormously invasive and there was no guarantee of success.
They thought that at that time in my life I was doing all right
health-wise. Bone marrow transplants, in the experimental stage, were
being used to treat very young children with Maroteaux-Lamy syndrome, but
my parents thought that it would be the last resort in dealing with my
condition.
Discovering Another Part of Myself
In the following years,
the University of Minnesota Medical Center, Fairview and the doctors there
became a large part of my life several times a year. The trips were filled
with numerous cat scans, MRI (magnetic resonance imaging) scans, and lots
of poking and prodding. I was never in the doctor’s office when the
discussion about my future or my condition took place. My parents never
wanted me to see myself as being different from my friends at such a young
age. They did not want my childhood innocence taken away too early. So, I
would go and play with toys in the waiting area where my Grandma Drew
usually waited for us, while my parents finished their conversations with
the doctors.
I
never realized that I had a disorder or that I was any different from my
friends until I was about twelve. My parents and a geneticist we’ll call
Dr. “W” introduced me to MPS VI in his office at the University of
Minnesota. I still did not grasp all of the information I was hearing at
that time mostly due to the shock of learning I actually had a medical
condition. I asked my mother, “So I actually have something?” To which she
responded, “Yes, honey you do.” I remarked, “I just thought I was short
and had to go to doctors a lot.” As a child, I had thought going to
numerous doctors was a normal part of everyone’s life. Even with that
thinking, I do distinctly remember a time when I was seven wishing that my
biggest worry would be learning my spelling words instead of anticipating
my upcoming surgery.
My disorder has forced me
to face a lot of challenges throughout life. I know God has given me these
challenges for a reason. I have always tried to make the decision to cope
with tough times by staying positive throughout the ups and downs of my
disorder’s symptoms. Many times as a teenager, I would say that it was
like I had two lives – one life full of doctors, nurses, hospitals,
surgeries, and pain, and a second life full of friends, family, laughing,
smiling, and partaking in as many normal teenage activities as I could. No
matter what, I know the future holds positive things for me, which is why
I believe so strongly in making lemonade out of lemons.
k
Two Different
Worlds
I am from two different
worlds.
The first world involves
the sterile stench
of hospitals, doctors,
and nurses.
This world is filled with
doctors treating me as if I
were a medical object and
not a person.
This world is filled with
knowing my health
is constantly in
question.
This world is filled with
yearning to simply be with my
friends worrying about
the upcoming math test, rather
then being anxious about
going into the OR.
This world is filled with
countless life-changing medical procedures.
This world is filled with
having to have Faith
in the almighty power.
The second world involves
being a “little person” in
a world built for taller
individuals.
This world is filled with
trying to prove to people that
I can do anything I set
my mind to.
This world is filled with
my desire for people to see
me as me and not see only
my incapabilities.
This world is filled with
amazing friends and family
that love me, because of
who I am.
This world is filled with
optimism, in that I can
make a difference in
society.
This world is filled with
understanding that God has
a plan for me and He
created me just the
way He wanted me to be.
I am from two different
worlds and I have accepted it!
Written in fall of 2009
k
Chapter 2
“Every great dream
begins with a dreamer.
Always remember, you have within you the strength,
the patience, and the passion
to reach for the stars to change the world.”
-Harriet Tubman
What Makes Up “Little”
Old Me
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Inspiration
Who inspires me? I am
inspired by people who make the decision to never give up on themselves or
on what they want to achieve during their lifetime. Inspiration to me is
anyone who ignores those who doubt and instead works to achieve their
personal dreams and goals. Many people may think I am talking only about
those who have a life-threatening condition, physical disability, or
learning disability, but I am talking about literally anyone in society –
big, small, tall, short, healthy or unhealthy. One thing I find
exceptionally inspirational is someone who is wholeheartedly passionate
about pursuing and reaching his or her own dreams and goals. I admire
people who have so much motivation that it radiates from them, so much so
that those around them cannot help but feel that same enthusiasm. I guess
what truly inspires me are the people who are able to take the lemons life
has given them and use them to make lemonade.
In
June of 2009, I read the book The Last Lecture by Dr. Randy Pausch.
While I did not have the privilege to meet him, his life and his works
have been an inspiration to me. He was diagnosed with pancreatic cancer
and was given only months to live. Rather than wallowing in his grief, he
made it a personal mission to share his memories and wisdom with his
family – and the rest of the world. Dr. Pausch inspired me because his
view of life is very similar to mine. His notion about brick walls in life
was dead on. He commented that the walls we hit in life make us who we
are. They define us. The walls either keep us working toward our goal or
cause us to give up. What I found most amazing was how Dr. Pausch was able
to achieve all of his childhood dreams in one way or another. Some of his
dreams turned out differently than he expected, but he was still happy
with how each dream played out. There are not many people who can say they
have achieved all of their childhood dreams.
Besides reaching his own dreams through his teaching, he helped others by
enabling them to achieve their own individual dreams. He did not agree
with other people who put limits on what a person could or could not do in
life. He developed an environment filled with encouragement for one
another, and stressed to all of his students that it was normal when
pioneering new ideas there will always be arrows at your back. You just
have to accept it. There will always be people who shoot down your ideas,
but you just have to put up with them. His philosophy was that if one
works hard for dreams, they can be reached in one way or another.
As I
reflect on Dr. Pausch’s belief that helping others adds fulfillment to
one’s life, I realize this is also a belief I value in my life. It can be
assisting in a simple way or a sizeable way; it does not matter. Along
with helping others, he talked about how loyalty is a two way street. He
believed in Karma. When someone does well, then goodness will come the way
of the giver. He wanted people to see that no one can get to where they
want to be without others. The support from family, friends, co-workers,
and students helps motivate a person in a healthy direction. I feel the
same way. Dr. Pausch mentioned that we all need to find the best in
everybody no matter how long it takes. I believe his outlook on life and
people is what made him a great teacher. He showed the realness of life
from his experiences. Dr. Pausch could have been mad at others because of
all of the challenges he faced, but he chose instead to see all the
goodness he had been given. A good teacher wants to see his or her
students excel no matter what and a good teacher helps them along the way.
That was what Dr. Pausch did and stood for. He passed on all of his
knowledge of life experiences to be used by the students as a tool of
dreaming big and working toward their goals.
After
reading The Last Lecture I reflected on how I do not let other
people or situations deter me from achieving my dreams and the goals I
have set for myself. I have yet to share exactly what those ambitions are.
As I think about my ambitions, each one usually falls within a few
categories. The categories are helping people, designing clothes and shoes
for little people, and being creative on my computer. The computer
projects include creating slideshow movies, designing brochures, business
cards, and advertisements for people.
My Goals in Life
My main goal in life and
what I am most passionate about is helping families and children who have
severe or lifethreatening illnesses. I have been in the hospital many
times and have had numerous doctor appointments, which helps me to
recognize and comprehend what it is like to be a child with the medical
world as an integral part of their lives. I know that I cannot relate to
each and every child’s individual situation, but I have a better knowledge
than others do when it comes to worrisome doctor appointments. It can be
an intensely scary time for children. Having someone who knows what it is
like to want to be anywhere else but in the hospital or doctor’s office
can help to ease a child’s fears. As I have grown up, I have seen how
having a child with an illness can impact parents and the family unit.
That is why I want to also assist parents through the process of dealing
with severe illnesses and conditions. My family has been lucky to have
wonderful individuals help us throughout my health issues, and I want to
be there for other families during their challenging times.
My
dream that coincides with this goal would be to work with children and
their families with severe or life-threatening illnesses through the
National MPS Society, Hide and Seek Foundation, Rare Disease Foundation,
and/or any organization that has to do with helping children with
illnesses or disabilities. My goal is to work with children and families
at one of the local hospitals in my area, Sanford Children’s Hospital. I
have gone to the Sanford Specialty Clinic for my treatment for over nine
years and feel at home with all of the doctors and nurses. I have been
extremely blessed with such great doctors, nurses, and Child Life
Specialists at Sanford Children’s Hospital. It is a dream of mine to join
their team and give back to others to make a difference in many children’s
and their families’ lives.
Besides working closely with families and children, I would enjoy being
able to use my creative skills within my place of employment. I have
always been an artistic soul. I want to work on creative computer
projects. Finding a job where these two criteria match up would be a job I
would look forward to going to each and every day. I would be doing what I
love and doing what I was put on this Earth to do.
Another aspect of my dream job involves a different type of design and
creativity. For as long as I can remember, I have loved to put outfits
together (and I have a pretty good knack for it). I would love to create
designs for clothing and shoes that could be made available to individuals
with short stature. I love designing and have designed my own dresses for
my junior and senior high school prom. I have a passion for designing
fashion for people with small stature…like me. Standing at only forty
inches tall and being fashionable has given me challenges. My biggest
challenge in trying to be as fashionable as my peers is finding clothing
and shoes that are age-appropriate for me. There are plenty of items that
are my size, but it is hard to find them without cartoon characters, pink
flowers, or popular Disney princesses as part of the garment design. This
predicament also goes with trying to find age-appropriate shoes. My
dilemma with shoes is that my feet are very short and very wide, which
makes it difficult to find shoes to fit my feet. As you can imagine,
trying to find non-cartoondecorated prom shoes was extremely tough.
Thankfully, my Grandma Drew and I were able to design shoes to be worn for
my junior and senior prom. I put my designing hat on with my grandma, and
we came up with some pretty cute shoes. My grandma helped me not only with
my shoes, but also by using her skills as an astonishing seamstress who
was able to turn my designs into reality. She is also the woman who alters
most of my garments. Rarely can I find something that fits me perfectly,
and when I do it is nothing short of a miracle!
Finding fashionable shoes in my size is something I have always dreamt of,
especially with high heels. Each fashion season that arrives with cute
summer and winter high heels is disappointing because of the fact that
they rarely come small enough for me. Recently, I did run across high heel
shoes that were my size. While the color selection of the shoes I found
was black, brown, and white, I still would love to be able to find some
fun, colorful high heels like Jimmy Choo’s in miniature form. The shoes I
have are much more basic, but I still smile widely when I wear them
because I finally feel like a grown up when I’m in them. While I wish it
were easy to just find great shoes that fit me perfectly, I’m
excited because it gives me even more of a reason to focus on creating a
clothing line that offers fashionable clothes and shoes for little people.
No matter what height a girl is, we all love shoes and clothes!