You Can Call Me “Smiley Kylee” 

By Kylee Hunter

You know your life will be interesting when one of the first words out of the doctor’s mouth at your birth is, “I think that’s a bladder”. My name is Kylee Hunter, I’m almost 18, and I was born with bladder exstrophy, a rare birth defect that occurs in 1 out of 50,000 live births, where the bladder and associated structures are improperly formed.  Throughout my childhood I’ve had fourteen surgeries to make my life as “normal” as possible.  To manage my condition, it requires different techniques just to empty my bladder and prevent serious infections.  For example, I’ve had to visit the nurse’s office every two hours to catheterize myself, as far back as kindergarten.  Catheterization is vital for me to survive. If I don’t catheterize in time, my bladder will cause pressure on my abdomen and block my catheter from entering through my Mitrofanoff.  A Mitrofanoff is a continent urinary diversion where my appendix was created into a channel from my abdomen wall into my bladder.  Despite catheterizing every two hours to prevent reflux into my kidneys, I’m still incontinent.  Since birth, I’ve worn diapers, pull-ups, or Poise pads. I still get infections, but as I’ve gotten older and more responsible they are minimal. Routine visits to my urologist and ultrasounds keep me in check.

One of my most challenging experiences has been going through school with an invisible disability. No one knew anything was wrong with me unless I shared my story.   Having this challenge also caused me to miss several days of school because of doctors’ appointments, urinary tract or kidney infections, and surgeries.   Not socializing with others or going days being confined to my house made me extremely sad and lonely.  Living with bladder exstrophy as a child is an experience one would never wish to endure alone. The closest person with this disability has always lived several miles away.

My mother also struggles with both Crohn’s disease and fibromyalgia and my youngest brother has severe asthma.  This makes my life difficult because if all three of us are having problems at the same time it’s very demanding on my dad to take care of us. Therefore, our family has had to learn to be patient with one another and this hasn’t always been easy.  I have become skilled at listening and holding my tongue when I get frustrated.  We still love each other despite our difficulties. It is a work in progress. From having bladder exstrophy, I learned to recognize the need to be kind to everyone, because you never know what might going on behind the scenes in their lives.

The decision to not allow my bladder exstrophy to define me and decide what I will accomplish in life wasn’t easy.  At first, I attempted to keep my medical issues secret, to feel “normal” and to not place myself in a situation where I might be teased.  I’ve since realized I need to not hide these anomalies which make me who I am, but to embrace them and show everyone these differences and challenges make me the strong person I am today.

I have been blessed with a wonderful family.  Recognizing the need to help me and support others with bladder exstrophy, my parents organized a support group campout.  For seventeen years now it has been held annually at Lake Tahoe for families with a bladder exstrophy member.  The B.E.S.T. (Bladder Exstrophy Support Team) in California offers exstrophy families emotional, educational, and social support.  Because of the stigma of physical differences and incontinence, they often experience emotional problems besides their physical difficulties.  Due to the rarity of bladder exstrophy, children with this anomaly often feel alone and different from everyone else.

As a young child, I began with just friend-shipping other children at the campout.  As I’ve grown, I’ve taken a greater role in the campout’s success. The preparation for the complete weekend of camping, speakers, and group activities is extensive and takes all year.  I start by brainstorming ideas with my mom and grandma and then get to work planning and preparing my assignments.  My duties include putting together the songbooks, campfire programs, games, crafts, and name tags.  We offer recreational activities and educational sessions addressing exstrophy topics.  I help come up with suggestions for topics and our keynote speakers, who are pediatric urologists from around the country.  For the past three years, I’ve led a group discussion for the girls; they get to relate, talk, ask questions and be around others who have been through the exstrophy experience.  I also share my personal experiences with the parents of these children, encouraging them to not worry so much and explaining their kids will be okay. I try to be outgoing and friendly to make sure all the children feel welcomed and accepted.  The increased numbers of families attending each year is evidence our efforts are successful and having an impact. I love to see the networking that goes on and the support each family offers one another. I plan to always be an advocate for the bladder exstrophy community, forever-educating families, obstetricians, and physicians, on the resources available to those born with this abnormality.  When my parents can no longer run our camp, I plan to continue what they started.

Since the start of elementary school, I have played basketball and softball.  During my sophomore year of high school, I was a three-sport athlete. Despite my disability I made it on to the Varsity Tennis, J.V. Basketball, and J.V. Softball teams.  However, in the middle of basketball season, my back began causing me severe pain, I ended up visiting a spinal surgeon. From him, I learned I had a splayed pelvis, with a bone missing that was supposed to hold it intact, all caused from my bladder exstrophy.  The surgeon said I had minimal back support and that hip pain would prevent me from running on hard surfaces. He also said there was no way to correct it and recommended I switch to biking or swimming.  I was devastated and didn’t want to give up the sports I loved.  I decided I would not give up all this hard work.  So, I asked the doctor if there was any way I could still play these sports.  He said I could try physical therapy to strengthen my abdominal muscles and back muscles but it would be very difficult.  I took on the challenge, and it was incredibly hard!  I went to the physical therapist often and would shake because the exercises they had me do were so painful.  But, because of my determined efforts, I was able to stay in tennis and two years later, my senior year, had the honor of being chosen captain of the team, placed 5th on the ladder in singles, varsity lettered in Tennis, and helped my team place 2nd in the league.  This experience was a great lesson and taught me I can persist no matter the enormity of the challenges.

I also might not be on the official cheer squad, but I love cheering on my team while I play sports. Cheering on my friends, family, and everyone I associate with, is something I do well.  I want to make sure everyone gets involved, and no one feels left out.  During my softball recreation years, I received the sportsmanship award five times, from five different teams.  This meant a lot and so I’ve continued to be this person on all my sports teams, cheering others on, being respectful and teachable, and encouraging teamwork.

From a young age I’ve loved to serve others.  I’ve now been a part of the Girl Scouts of America for 9 years. For my Bronze Award Project, my troop signed several Christmas cards for the elderly and delivered them to numerous nursing homes in the surrounding counties.  I loved being able to wish a Merry Christmas to people who rarely receive visitors during the Christmas season.  They were so excited to see our troop!  We also drew them pictures and wrote nice little letters. We stayed and played chess with them and learned about their lives while they shared stories.  For my Silver Award Project, I sewed and stuffed “Hearts 2 Hug” for the local Sheriff’s Department and Women’s Shelter to give to traumatized children.  I hoped to provide the children something to hold on to while scared, frightened and lonely.  It surprised me how excited the children were for a simple heart pillow. This experience instilled in me a desire to serve children more often. Every child needs to feel loved, even if it’s through a simple stuffed heart.  I’m currently working on my Gold Project, which will be putting together a pamphlet with information about our B.E.S.T. campout and other resources for the Exstrophy community.  I plan to distribute this statewide.

Music is another primary factor in my life.  I began playing the flute in the fourth grade and was section leader throughout middle school. My freshman year I was picked as 1st chair flute in the Advanced Symphonic Band.  I learned how to lead sectionals, calm my section down, and teach others fingerings. From this experience I made lifelong friends and my love for the flute grew.  I loved how I could help my friends become better at the flute and I’m now giving flute lessons to my little brother.  My freshman year our concert band received the highest rankings at every competition.  It was also an honor to have been invited to join the Advanced Women’s Chorus my first year of choir.  This choir also received the highest competition rankings.  I have since lettered in music and been blessed to continue my love of music, singing and playing my flute with my choir at church.

This year, as a senior, I was selected to sing in the Chamber Choir.  It is a great honor to be a member of this award-winning choir.  We perform at several community functions throughout the year and provide holiday and seasonal school performances.  One must audition and commit to after school practices. Along with singing, I was chosen to play my flute in the cabaret to raise money for the choir trip to the Heritage Music Festival, where both the Chamber Choir and Advanced Women’s Chorus won first place.

My involvement in Student Government has extended throughout elementary school, middle school, and high school. In middle school, I was the ASB Treasurer and then in high school I’ve served as the Freshman Class Representative, Sophomore Class President, Community Service Coordinator, and Associated Student Body Treasurer again. I’ve been responsible for planning multiple dances, rallies, activities and homecoming events. I also help plan the Special Education class prom and dinner and their class parties each year. As ASB Treasurer, I manage the finances for the student activities.

I am also the Public Relations Officer for both Key Club and the Family Roots Club, and as the Community Service Coordinator I put on the Pennies for Patients fundraiser, the Kids Canned Food Drive, served on the Random Acts of Kindness Week committee and helped plan a fundraiser for a girl who needed a heart transplant.  I’ve provided staff luncheons and gifts for every teacher on their birthday.  I have also performed many service projects. Last year I helped start the Family Roots Club. Our club taught people how to use ancestry.com and showed them how to find their ancestors. I was the Public Relations Officer, so I helped recruit and make posters for the club.

Through my school leadership involvement I’ve learned to work with a diverse group of people. Our goal has always been to unify our school and provide a positive learning environment. I certainly appreciate being surrounded by people who demonstrate leadership, strength, guidance, and responsibility. I am so grateful for all the opportunities I have been given and hope to be able to keep my health up so I can stay involved and help other kids know that even if they have a disability they can do hard things.

The summer of my sophomore year I won the title of Jr. Miss El Dorado County! It was fun and extremely rewarding and I served my community in several ways.  I also had the opportunity to judge a pageant based on confidence and inner beauty.  I’ve been privileged to fundraise for the Children’s Miracle Network and raise awareness for my platform, the Ronald McDonald House.

I competed the following two years in the Miss Sacramento County’s Outstanding Teen Pageant.  Both years I placed in the top four and was chosen as Miss Congeniality and the Facebook Fan Favorite.  One year I also won the Spirit of America award. Recently, I placed third runner-up in the Miss Placer County pageant and received the overall Community Service and Best Essay awards.  While serving on the Miss Placer County court, I took part in multiple community service events and parades.  My favorite has been raising money for our military at the Honor Bowl event, sponsored by The Honor Group. They educate communities about the needs of our Veterans.  It was a privilege to view a fallen soldier ceremony.

One summer I had the privilege of being an assistant counselor to a group of ten girls at my church summer camp.  During the week I assisted the counselor by helping the girls build relationships, go on a hike and teach them how to build a fire and other useful skills.  This past summer, I was on the volunteer staff again.  Every day I woke up and helped on the rock! At the rock, we belayed for repelling, rock wall climbing, and trust exercises.  I loved being able to belay on the rock wall because I could see the progress in the girls’ skills and help them find footholds.

Last year I was selected to be a self-esteem coach for presentations on positive self-awareness.  This was part of the Soroptimist program, “Girl Talk”.  As one of the five public speakers, I helped write the script from personal experiences and also learned how to talk to middle school aged girls about growing up and gaining self-confidence.  I was able to look back on my life and how I have dealt with my disability growing up.

Holding a job during school, sports and church activities is both challenging and fulfilling. I worked summers at the Frostbite Shaved Ice Shack and by age 16 had become a shift manager. In the fall of 11th grade, I started working for Regal Movie Theater, which taught me how to prioritize my time and communicate with customers.  It is satisfying to realize how well I have learned to work with others and save money for my mission and college.  I have worked at the movie theater for 1 year now and was employee of the month last October!

This summer I’m planning to be a counselor at the Youth Rally.  This is a camp for kids with an array of conditions affecting their bowel and/or bladder systems.  It is difficult being a teen with a disability, and I want to support them through these tough times just as my counselors helped me.  Another desire of mine is to become a motivational speaker for youth.  I not only know what it’s like to experience the trials of living with a disability but also what it’s like to be a teenager.  Life is difficult, but I’ve learned if you stay positive and make good choices, things will invariably get better.  It’s important to me to help people with disabilities grasp that all people deal with challenges and those issues are there for a purpose.  Through my personal adventures, I have learned it’s essential to discover what you love to do and then do it, so you can enjoy life and be happy.   I am determined to never give up or miss out on whatever I want to do in life.

Last year, I decided I wanted to make a larger impact in the world, so I signed up for the Humanitarian Experience For Youth program.  In addition to hiking the amazing natural wonder of the world, Machu Picchu, it was here I realized how blessed I have been and the depth of the passion I have for serving those less fortunate.  During this 17-day service trip to Lima, Peru, I helped build a medical clinic in an area that lacked treatment for families.  We built the walls with bricks and cement and I learned how to install rebar.  I also helped local schoolteachers with their English program by volunteering in their classrooms twice a week.  It was very rewarding to accomplish so much in so little time. The work was extremely exhausting, but I would do it again without hesitation.  Even though my parents were very concerned about my health while in Peru, I took all precautions, drank only bottled water, catheterized frequently, watched what I ate, used a ton of hand sanitizer and came back as healthy as I was when I left. Because I’ve been the recipient of so much service, I want to always “pay it forward”

I’ve also always wanted to serve a mission for my church.  Doing so means spending eighteen months spreading the word of Christ and offering service wherever you are sent. This past summer, while I traveled to Peru, I performed service there with the local church missionaries.  Those seventeen days were the happiest I have ever experienced.  I believe it’s because I totally focused on others. My humanitarian leader told me he served a church mission and that our experience in Peru was as close as one could get to the feeling you have on a mission without serving one. Assisting in Peru has strengthened the desire I have had since I was a child, to prepare for and to serve a church mission. I am hopeful my medical challenges will not derail this dream.

I also love to visit people in the hospital.  When I learn a child or adult in the hospital for any reason, I make it a priority to visit them often.  I have a natural soft spot for those in the hospital because I know hospital stays are not fun.  I have visited with family, friends, friends of my parents and even acquaintances.  Visiting others has further educated me on patients’ perspectives, which is helping me in my goal of becoming a Child Life Specialist.

Another experience I recall is when the nurse struggled to get the I.V. to work for my twelfth surgery. She had tried numerous times without success and I was on the verge of tears.  As I was about to cry, a kind woman came in, held my hand, taught me techniques to help calm down and helped me receive a numbing shot.  The nurse was then able to get the I.V. in on her next try! I was in awe of this angelic person whom I learned was a Child Life Specialist.  Right at that moment, I decided I wanted to be just like her, comforting youth going into surgery and reducing any fear and confusion they might experience concerning their medical procedures.  I believe my experience, as a child in the hospital, will benefit the children I work with through my ability to empathize.

This fall I plan to attend Brigham Young University and take advantage of their excellent Family Life and Human Development department. Child Life Specialists are child development experts who work with medical staff to make sure life remains as normal as possible for children in health care settings, and to help meet the unique needs of each child and family. Through my experience as a patient, I believe I can be forward-looking, equipped with knowledge of what helped me. I have faith in my good intentions and goals in life and never plan to give up and always expect to succeed.

A favorite quote of mine is, “Just know, when you truly want success, you’ll never give up on it. No matter how bad the situation may get.” ~Unknown.

© 2016 Kylee Hunter & Courage to Shine™

E-mail at Kylee at Kylee@courage-to-shine.org

For additional info on Kylee go to: Kylee Hunter

Please read Courage-to-Shine.org disclaimer!