
 
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
      
      
        
        
          
            
            
                | 
 
  Foreword 
               |  
                | 
 
  Prologue 
               |  
                | 
 
  Chapter 
  1: How My Journey Began 
               |  
                | 
 
  Chapter 
  2: What Makes UP "Little" Old Me 
               |  
                | 
 
  Chapter 3: Parents that Never 
  Give Up 
               |  
                | 
 
  Chapter 4: The Importance of 
  Extended Family 
               |  
                | 
 
  Chapter 5: Bonds of 
  Friendship 
               |  
                | 
 
  Chapter 6: Educators with 
  Impact 
               |  
                | 
 
  Chapter 7: Coming to Depend 
  on Faith 
               |  
                | 
 
  Chapter 8: Choosing to be 
  Different 
               |  
                | 
 
  Chapter 9: Facing Challanges 
               |  
                | 
 
  Chapter 10: Using Technology 
  to Fill the Void 
               |  
                | 
 
  Chapter 11: Making Choices 
               |  
                | 
 
  Chapter 12: Appreciating the 
  "Little" Things in Life 
               |  
                | 
 
  Chapter 13: Dtermination, 
  Determination, Determination 
               |  
                | 
 
  Chapter 14: Lending a Helping 
  Hand 
               |  
                | 
 
  Chapter 15: Starting a 
  Movement 
               |  
                | 
 
  Epilogue 
               |  
                | 
 
  Acknowledgments 
               |  
             
             | 
          
        
        
       
      
      k
      
      
      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 
      
      k
      
      
      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
      
      k
      
      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 
      
      k
      
      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!