Source: Reykjavík, Iceland – Oct 1999
Courage to Shine News
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!
By: Kylee Rebecca Hunter
I was born with bladder exstrophy, a rare abnormality where the bladder and associated structures are improperly formed. Those with this anomaly experience multiple surgeries, incontinence, and urinary tract infections. Because of the stigma of physical differences and incontinence, they often experience emotional problems in addition to their physical difficulties. Recognizing the need to help me and others with this anomaly, my parents organized a support group campout. It is held annually at Lake Tahoe for families with a bladder exstrophy member and offers exstrophy families emotional, educational, and social support.
As a young child, I began with just friend-shipping other children at the camp out. As I’ve grown, I’ve taken a greater role in the camp out’s success. The preparation for the weekend of camping is extensive and takes all year. I brainstorm ideas with my parents and then get to work planning and preparing my assignments. My duties include campfire programs, games, crafts, food preparation, nametags and supervision. In addition to recreational activities, educational sessions addressing Exstrophy topics are held. I help come up with topics for our speakers who are pediatric urologists.
For three years, I’ve led a group discussion for the girls; they get to relate, talk, ask questions and be comfortable with others going through the Exstrophy experience. The most difficult challenge is finding time to spend with everyone. Because of the length of the camp out and increasing numbers of attendees, it is hard to visit one on one. Despite this, I have made many new friends. I’ve also gained experience working with children and have learned everyone is unique with different challenges. I love to see the networking that goes on and the support each family offers one another.
My future goal is to become a Child Life Specialist, who works with children and families in hospitals to help them cope with the challenges of hospitalization, illness, and disability. This major is new and could be considered forward looking since these specialists have not always been available. Through my experience as a patient and my 14 surgeries, I believe I can be “forward looking” knowing what helped me and improve ways to help the children I will serve.
In conclusion, 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. For my Girl Scout Gold Award, I’m putting together a pamphlet with information about our camp out and other resources for the Exstrophy community, which I plan to distribute statewide. When my parents cannot run the camp out anymore, I plan to continue what they’ve started. I encourage everyone to volunteer as much as they can because it makes you happy to help others. My experiences in my volunteer positions relate to all aspects of my future. I hope that in twenty or thirty years my volunteer activities will have made a positive difference in the lives of those I served.
© 2016 Kylee Hunter & Courage to Shine™
E-mail at Kylee at Kylee@courage-to-shine.org
Please read Courage-to-Shine.org disclaimer!
Friday August 4 to Sunday August 6, 2017
IF you’d like to stay in a hotel, accommodations are close by. Inn by the Lake – This hotel is very nice and it’s almost across the street from the campground and within short walking distance there are many hotels/motels.
Please go to http://www.best-cal.com/campout/
You might also be interest in 2017 International Exstrophy Conference in Philadephia, PA or The 2017 A-BE-C Great Lakes Chapter 9th Annual Summer Campout in Indiana
Michael Dickman – From Australia
2017 International Exstrophy Conference In Philadelphia, Pennsylvania, USA
Save the dates now! The 2017 International Exstrophy Conference will be at the Children’s Hospital of Philadelphia on Friday, June 9 through Sunday, June 11. More details to be announced in the coming months.
From the 2015 International Exstrophy Conference
Angling over Adversity
By Matt Elkins
My name is Matt Elkins; I’m 40 years old; I’m married; I live in Spencerville, Ohio; I’m an environmental specialist by trade; and I have a passion for hunting and tournament bass fishing. That pretty much sums me up in as few words as possible. What is missing from that definition of me is that I was born with cloacal exstrophy, spina bifida and several orthopedic defects. My medical history is missing from the above description of me because, well, my medical history is not what defines me. Cloacal exstrophy is a very rare congenital condition where you are born with both the bladder and a portion of the intestine outside of your abdomen. Spina bifida and related orthopedic defects commonly occur with cloacal exstrophy.
I was born very premature at a local hospital in Lima, Ohio in 1976. Within a few hours of my birth I was transported to Children’s Hospital in Dayton, Ohio, but not before my staunch Catholic family could have me baptized for fear of losing me that night! Once at Children’s Hospital, I underwent my first of many surgeries and was given a colostomy. Shortly after that, a fatty tumor was removed from my lower back at the section of my spinal column affected by the spina bifida. Many, many more operations followed as a child to correct club feet, ostomy revisions, an osteotomy, and build a urinary diversion.
However, my childhood was wonderful! I played soccer and baseball, participated in 4-H, and spent every free minute of my summertime playing at the neighborhood farm pond or in the adjacent woods. I’ve been fascinated by fish, frogs or any animal that I could catch my entire life. My mom even tells a story about sending me down to the pond at 3-years old wearing my life jacket and somehow I came home with a fish in a bucket! To this day she has no idea how I caught that fish! But that is just me. I catch fish. That is what I do.
It was between the ages of 5 and 9 when I went through all of my toughest surgeries. Those are the years where I had an osteotomy and received my original urinary diversion. My bladder was constructed with intestinal tissue and continence was achieved with an artificial urinary sphincter. My colostomy was also revised into an ileostomy. With the exception of a few revisions to the sphincter and a month long stay in the hospital for an ostomy revision that didn’t quite turn out as planned, my surgeries were pretty much over by the time I graduated high school.
I didn’t play high school sports. I just never had the size or speed to be competitive. So, I worked through high school carrying out groceries at the local supermarket. I had the typical small town high school experience anyone would expect, hanging out with friends, parties, getting into trouble… you know, typical teen-age activities. I was also blessed with the opportunity to attend the Youth Rally every summer. This was a fantastic opportunity for me to connect with other kids with similar medical conditions. I made some terrific friendships at that camp, several of which continue today, and I have memories I’ll always cherish.i
After high school I attended The Ohio State University and eventually graduated in 1998 with a bachelor’s degree in Environmental Science. After college, I moved to Cincinnati to begin a career as an environmental consultant. Eventually, to further my career, I graduated with a Master’s in Business Administration (MBA) in 2009. Professionally, I have worked my way up from the position of field technician to Senior Environmental Project Manager as a consultant, and I now work in the environmental department of an oil refinery in my hometown community managing environmental permits and hazardous waste disposal.
Growing up, I can recall my mother encouraging me to do well in school, and emphasizing that finding a job where I can use my mind, instead of my body, was important. She used the example that standing all day on a concrete factory floor would be hard on my feet, which, even as a stubborn teenager, was logic that I could agree with. So, although I made just average grades in high school, I buckled down in college and pursued a degree that paralleled my love for the outdoors. My experience as a student with certain medical needs was really not that different than anyone else. I chose work and friends over high school athletics, and dorm life didn’t pose any challenges, even with an ostomy.
My passion for fishing and hunting flourished after college. I began fishing small club tournaments, and eventually qualified for a couple federation State Teams as a young angler. Fast forward 10 years and now I compete and hold my own among the top anglers in the Great Lakes region, and I have even dabbled in national Tour-level competition. Development as a tournament fisherman happens similarly to developing any career, you work your way up through the ranks and gain experience as you go. Eventually, you can qualify to compete in large championship events and even try your luck in the professional levels. I routinely compete at the local level fishing the FLW Bass Fishing League (BFL) Michigan division tournaments on Lake Erie and Lake St. Clair, and I routinely compete in any Triple-A level (FLW Costa Series and BASS Northern Open) events that visit Lake Erie and Lake St. Clair. In 2012, I lived my lifelong dream of competing at the Tour level by competing as a professional in an FLW Tour event out of Detroit, Michigan against bass fishing’s best anglers.
So how does a person with exstrophy, two ostomies, spina bifida and related orthopedic issues compete on the great lakes against the sports best? Simple… through hard work, just like everyone else. I do not let anything hold me back and I don’t make excuses. How successful could an exstrophy patient possibly be? 2015 was a spectacular year for me with two top 10’s (including a win) in BFL competition, a top 10 at the Triple-A level (FLW Sandusky Rayovac), and 2nd in an 80+ boat annual open event out of Detroit. This year, 2016 has been a good year as well, with another two top 10’s in BFL competition, including another win on the Detroit River in August. In the past two years alone I’ve cashed more than $30,000 in tournament winnings. That’s a pretty stout resume for anyone, regardless of their physical limitations.
I guess my point is not to brag about how good I am at catching bass, but to try to lead by example and give a little hope and inspiration to those facing a long road ahead. You see, in spite of a lot of challenging times throughout my life, I’ve been able to accomplish my goals academically and professionally in my environmental career, and excel competitively from the deck of my bass boat.
In December of 2008 I started dating the love of my life, Lauren. She grew up in the same small Ohio town, but was living in Maine when we reconnected. We knew each other as children in 4-H, and reunited through social media. After a couple months of friendly emails, I asked her if she would like to go to a local wine tasting event when she came home for Christmas. We’ve been together ever since.
For the better part of two years we were able to maintain a long distance relationship, which is never easy to do. She would travel home to see family and me, while I’d travel to New England to visit her. Eventually, Lauren took the leap of faith and moved back to Ohio to be with me. We were married in October 2012 at St. Joseph Catholic Church, where I’ve been a member all of my life, and we still attend services today. Lauren is the best thing to ever happen to me. She keeps me grounded, keeps me from becoming too selfish and wrapped up in my hobbies, adds color and beauty to my life, and brings a little (needed) chaos to what was my very structured, bachelor lifestyle. She could probably say the same for me.
Just six months after we were married Lauren and I faced something we exstrophy patients fear. Failure of my urinary diversion set-up. The artificial urinary sphincter, which had served me well for about 30 years, eroded into my bladder tearing a large hole. My childhood doctor had long since retired, and my urologist needed to refer me to a more experienced specialist. Fortunately, he sent me to an excellent surgeon and team at Ohio State Medical Center. Unfortunately, my bladder was toast, and an infection set in around the failed artificial sphincter. The process to get scheduled for surgery was nearly a six-month ordeal, and I eventually underwent a radical cystectomy, which is where my bladder was removed and I was given a urostomy. I knew I was living on borrowed time with my artificial sphincter, as my doctors told me the useful expectancy of that device is at most 10 years, and I’d been living with it nearly 30 years, but Lauren had never endured a loved one going through such a serious procedure with a potentially life changing outcome. She was a trooper though, never leaving my side, and I can only imagine how she felt when they wheeled me down the hall to the operating room. I’m sure there are some moms and dads reading this that can relate. My surgery date was exactly 1-year from our wedding day. So, we spent our first wedding anniversary cuddled up in my hospital bed! Not the most romantic anniversary, but he (priest) did say, through sickness and in health!
My urostomy surgery went fantastically, with only some post-operative swelling that caused some short-term complications. Truth be told, I recovered very well and was back to pursuing my passion for hunting, probably, earlier than I should have. Six weeks and 1-day following my operation, I shot a nice 9-point buck while hunting with my brother. Now, I didn’t climb any trees and I hunted from a make-shift blind on the ground, and my dad and brother did all the heavy lifting to drag that deer out of the woods, but, hey, I got out there and got it done! That was a pretty big milestone in my recovery, and the point I knew I was going to be just fine. However, I didn’t clear that strenuous outdoor activity with my doctor first, and I was a little worried as to what might happen to that newly healed 10-inch scar down my belly when that 12-gage kicked back! I mean, just a few weeks earlier that incision was stapled shut! Luckily, the day was a total success, and I took it a little easier through Christmas! Within one week of that hunt, though, I was back to work full time, and by late January I was ice fishing for walleye 10-miles out on Lake Erie, and I haven’t slowed down since.
Prior to my 2013 surgery, I was not really involved with the exstropy or ostomy community. I guess I thought that since many of the procedures done today are different than what I had been given, I really didn’t have much advice to give others… so I didn’t really participate. However, when I reached out to these communities to answer a few questions prior to surgery, I found them welcoming and very helpful, and I found that in some situations I could share my experiences to help others down their own path. More than that, though, I’ve tried to find ways to incorporate my passion for fishing into helping others facing similar circumstances as my own. For example: I’ve given a presentation to my local ostomy support chapter (which of course included a few slides of big bass and harvested deer – some of the old men in that group loved those slides); and I wrote an article for Hollister’s Secure Start newsletter that used my tournament fishing to demonstrate an active and healthy lifestyle after ostomy surgery. Recently, I decided to publicize on my Facebook page a fundraising drive to raise money and awareness for the Youth Rally camp by pledging $3 per pound of bass I weigh in at my BLF fishing tournaments to that organization. I have been very fortunate, and, after experiencing the support from the various exstrophy and ostomy communities during my setback in 2013, I’ve been trying to give back where I can. Even if it is something as simple as taking a new friend fishing.
© 2016 Matt Elkins & Courage to Shine™
E-mail at Matt at firstname.lastname@example.org
Please read Courage-to-Shine.org disclaimer!
I am excited to announce I have been nominated for the 2016 WEGO Health Activist Awards.
WEGO Health, a network of +100k patient influencers, has create the awards program to:
- Recognize patient influencers who have become leaders among leaders
- Connect patient leaders to each other, across conditions and platforms
- Give a big “Thank You” to all the leaders impacting their lives
I am so excited and so grateful to be nominated. Thank you to all those who have nominated me-it means the world!
We have just entered the endorsement phase and I would love if you could endorse me. You can vote daily, so if I have ever supported you, made you laugh or inspired you to keep fighting- please vote for me!
If you know anyone within our community who should have been nominated, don’t worry there is still time. Make sure to nominate all health leaders today because they all deserve to be celebrated!
Janet Rankin – Triumph Over Adversity Down Under
2016 Courage to Shine™ Lisha Martinez & Adam Young Award
Brittney Freeman was presented with the 2016 Courage to Shine™ Lisha Marttinez & Adam Young Award on Saturday July 9 2016.
Brittney Nichole Freeman is a 27-year-old born with classic exstrophy. Born Brittney Nichole Godfrey on August 2nd,1988, Brittney had her primary major reconstruction surgery at the Children’s Hospital of the University of Oklahoma in 2000, as a patient Dr. Bradley Kropp. He is, in her eyes, a miracle worker. She loves to proudly show off his handiwork in the form of her awesome belly button; that is also her cathing stoma. She loves that she is able to catheterize, even if it can at times be very painful. As a child she was constantly wet and wore pull ups until she met Dr. Kropp and his nurse Lori in 1999.
Brittney had a wonderful childhood being raised in her hometown of Sand Springs, Oklahoma. As a child Brittney loved to dance, cheerleader, and write contracts for her parents to sign. In elementary school she attended a theater camp and it was there that she fell in love with being on the stage. Even though bladder exstrophy made it hard to fit in with her classmates at times, she still was able to make a great group of friends that she remains friends with today. In the summer of 2003 Brittney got eye glasses; and this changed the course of her life forever. For the first time she was able to read without getting a headache! During that summer Brittney fondly remembers how reading The Notebook, by Nicholas Sparks, kindled an intense love for reading. This love of reading inspired her to pursue a profession as an English teacher. And her love of Theater never left her. Brittney is also a certified Speech, Debate, and Drama teacher.
Brittney considers her greatest accomplishment so far is earning her bachelor’s degree in English education from Northeastern State University. She credits her family and their unyielding support for her as the main reason she was able to graduate university. Her mother, Julie; and her Father, Troy; supported her through college, high school, and childhood. On April 19, 2008 Brittney married Donnie Freeman. Her husband and step-son, Tray love her unconditionally. Brittney feels fortunate to have a close and supportive family; her brother, Anthony and his wife, Dreama, her adopted sister, Cristy and her loving grandparents, Anna and Lorenza Godfrey. She is a self-described “momma’s girl” and can be found every weekend visiting her mom, dad, and grandparents at their home in Sand Springs.
Brittney loves to teach; it is truly
Mher calling. She teaches 8th grade English at Catoosa Public Schools in Oklahoma. She also sponsors the Drama club, and Student Council.
Brittney was at times in her life was bullied for being different. So, she tells her students about her birth defect and she also has them read articles written for the “Courage to Shine” blog page. She loves to use her bladder exstrophy and the adversity that she has faced within her lifetime to inspire her students to know, “that no matter what you are facing, you too, have the courage to shine.”
To email Brittney Freeman: Brittney@courage-to-shine.org
2017 A-BE-C Great Lakes Chapter 9th Annual Summer Campout
Friday, July 14 to Sunday, July 16, 2017
You are invited to join us for a weekend campout with families dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias. This is a great way to connect with other families, share in similar experiences and know that you are not alone!!
Location and facilities:
In 2016 Great Lakes Exstrophy Campout had! 19 families attended (62 people total!) from 9 states and 1 Canadian Province: Illinois, Indiana, Massachusetts, Michigan, New Jersey, Ohio, Pennsylvania, Texas, Wisconsin and Ontario. 5 new families attended our campout for the first time, which was really great!
The A-BE-C is an international support network of individuals with bladder exstrophy (including classic exstrophy, cloacal exstrophy, and epispadias), local parent-exstrophy support groups, and health care providers who work with patients and families living with bladder exstrophy. http://www.bladderexstrophy.com
The Great Lakes Chapter of The A-BE-C is a regional network serving the Great Lakes states (MI, MN, WI, IL, IN, NY, PA, and OH) as well as Ontario. For questions about future A-BE-C Great Lakes Chapter events, please e-mail Alice Ambrose at email@example.com , call her at home at (616) 895-6375, or call/text her at (616) 406-7857.
For information: Please go to the following flyer: Summer 2017 Great Lakes Chapter Campout
You might also be interest in 2017 International Exstrophy Conference in Philadephia, PA or The 2017 B.E.S.T. (Bladder Exstrophy Support Team) Campout
Jon Pierroz – Adversity to Triumph
Jon Pierroz interview by Courage to Shine™ and he just got married this month.
Classic Bladder Exstrophy
Email to Jon: Jon@courage-to-shine.org
Please read Courage-to-Shine.org disclaimer!
Note: “Being Secure & Sure of Oneself is a Beautiful Thing” originally appeared in Ostomy Canada Magazine in the Winter 2015 Issue on pages 52-53, 56. It is used under permission from Ostomy Canada Magazine which is the official magazine of Ostomy Canada.
Being Secure & Sure of Oneself is a Beautiful Thing
By Erin Kavanagh
I remember being around ten years old when I started to realize something separated me from my peers. As I started to grow older and more aware that my everyday routine differed from everyone else’s, I began to feel isolated. Ten-year-old me didn’t know anyone else my age who always had to have a catheter with them, or a bag attached to their abdomen. Then, on the first day of Ostomy Canada Society Youth Camp located just outside of Bragg Creek, AB at Camp Horizon Easter Seals, I met dozens of kids with experiences and ostomy bags just like mine. Suddenly the part of me that I had always worried made me different, ended up uniting me with people who were more accepting of me than I was of myself. Apart, we felt like misfits, but together we were reminded that we were not alone in our struggles.
My medical journey started when my mother was six and a half months pregnant with me. Her pregnancy was going completely as planned, and she was due to have me on Valentine’s Day. She wasn’t due for another ultrasound for nearly a month, but called up a family friend who happened to be an ob-gyn and sonographer after getting the feeling that something wasn’t right.
“I thought something was wrong because I was just larger than I had been with my first pregnancy at the same gestational period. So I went to my physician and they did blood-work and there was no indication that anything was wrong. But several weeks later I still had this feeling that something just wasn’t right, and it felt like I was carrying twins.” To put it simply, if my mother hadn’t gone in when she did, I wouldn’t be here today.
Shortly into the ultrasound it became clear that there was a large mass protruding from my back. My mother was told to go to Johns Hopkins Hospital in Baltimore, Maryland where they diagnosed me with a Sacrococcygeal Teratoma, a rare type of tumor that forms at the base of the spinal cord. Less than a month later the tumor had grown so large it triggered my mother to go into pre-term labor. I was born nearly two months early, weighing seven pounds. I weighed three pounds while the tumor weighed four.
At the time, only two hospitals in the country were willing to do my surgery, Johns Hopkins being one of them. From the very start, some of the best doctors in the U.S. were on my case, and they had never seen a tumor as large as mine. The internal part of my tumor had become highly vascularized: it had spread throughout my sacral plexus and up nearly half my spinal cord and the pressure it was exerting had dislocated one of my hips. After a biopsy, the tumor was classified as malignant, making it even more imperative that every bit of the tumor be removed.
My ostomy was first meant as a bowel diversion while doctors attempted to remove the tumor from my pelvis and spinal cord. In two operations that lasted nearly 20 hours total, surgeons successfully removed the four-pound tumor. My heart stopped twice from loss of blood but I survived thanks to the amazing team of doctors on my case. Unfortunately, the tumor was so invasive, the surgeons were forced to remove large amounts of nerves and muscles in my lower back, leaving me with nerve damage in my colon bladder, and legs. Due to the lack of muscles and nerve control over my colon, I now have a permanent colostomy. Since my bladder was also damaged, I had a procedure when I was seven called a mitrofanoff. Doctors made a channel out of my appendix from my bladder to my belly button and sealed off my urethra so I could catheterize this channel and have full control over my bladder.
Even though I had survived the initial surgery, my journey was far from over. There was still a very high chance that my tumor would grow back, and if it did, doctors believed the cancer would probably return as well. While my type of tumor is rare, it’s even rarer for the tumor to be malignant and thus the cancer is highly aggressive. My parents were told that if the cancer did come back, my chances of surviving past age three were very slim. Preventative chemotherapy was considered, but since I was so young it would have had detrimental effects on my already impaired development. When I was one and a half, a MRI scan showed the original tumor had grown back, but luckily it was a benign section. The re-growth was successfully removed and I have been tumor-free since.
Doctors initially told my parents that they expected me to have many cognitive and motor defects. They didn’t know what effects the operations and medications had had on my brain function, and didn’t expect me to walk or talk. Although many of my milestones were delayed, I eventually walked and talked with the great help and encouragement of my parents, physicians and therapists. I’ve had over ten operations on my hip, knee, and both feet and now I am able to walk not only on my own, but without the need of crutches or leg braces. Although I do have to conserve my energy, the ability to walk at all, far surpassed any expectations my surgeons had for me. If there is one thing my stubbornness has taught me, it’s that most limitations are self-imposed, and are not necessarily reality.
My parents made it clear they believed I could achieve anything I set my mind to, and this is a mindset I maintain. My cognitive skills were by no means affected by the tumor: I have been on the honor roll every year of middle and high school and have taken as many advanced placement courses as I could throughout my high school career. I am in the top 5% of my graduating class and am attending Carnegie Mellon University. I plan on taking a pre-med track.
In my free time, I participate in a variety of activities, some of my favorites being a number of science and art clubs, being President of my high school orchestra, in which I play violin, and I also play piano. I just finished learning the second movement of Mozart’s 21st Piano Concerto. While I am plenty busy during school, I also make sure to keep my summers just as busy. For the past eight years, I’ve attended Ostomy Canada Society’s Youth camp. I’ve also attended the United Ostomy Associations of America Youth Rally. Both are programs specially designed for people with bowel or bladder diversions, and both have forever changed me.
It was at Camp Horizon where I first met someone my age with an ostomy. With the guidance of my older friends and the counselors, I’ve learned to develop the leadership skills I didn’t know I had. I had always thought of myself as an observer; that I would be the person behind the scenes and never the one leading the charge. But camp allowed my independence to blossom, something that might be considered difficult for someone who has to perform daily bladder irrigation and take medications in order to stay healthy. I take pride in knowing that now younger campers look to me as a mentor: someone they can trust and see has real acceptance of both herself and others.
One of my best memories of camp is the climbing wall. My first year there, our team was scheduled to go rock climbing the first day At that point I still had bulky leg braces up to my knees on both feet, and although I had tried rock climbing walls back home, I had never reached the top. When it was my turn, I remember being determined to go all the way up. But about halfway up the wall, my strength was ebbing and my legs couldn’t find any rocks to rest on. Then from the bottom of the wall, I heard a chorus of shouts and words of encouragement. My teammates kept saying, “Go Erin! You can make it!” The instructor started coaching me as to the best place rocks to put my feet on. Suddenly I remembered the goal I had in the first place, and their kind words made me realize that I could keep going, I just had to push myself. Needless to say, the sound of the bell ringing at the top of the wall was met with triumphant yells and clapping from the people watching me down below.
Camp has been a critical building block, not only for my independence, but my confidence as well. Not only that, but the connections and network I’ve built with both camps and Ostomy Canada Society have helped me countless times. I honestly didn’t know there was a stigma around ostomies until I came to camp. Up until then, my world had been carefully sheltered, and everyone who did know about my ostomy had never treated me differently. I now realize my classmates at school could have easily isolated me, but instead they chose to see past my differences. In pre-school, I had a major operation to place my dislocated hip back in its socket, which required breaking and resetting my femur. I had to wear a full-body cast for almost six months, but when I came back to class the first thing my classmates noticed was the cast’s color: purple. They wrote their names all over it and even threw a party for me when I got it off.
When I heard stories from my fellow campers about other people being not as accepting, I didn’t fully understand them. Then when I had some encounters in middle and high school, I realized there were people who were isolating me because of my medical problems. Luckily those people were few and far between. Still, it made me worried that people who I wanted to ‘like’ me might see my medical conditions as a reason not to. I remember bringing up the question with my friends at camp. The advice they gave me has stuck with me all these years, and that is that you should never be ashamed of obstacles you’ve overcome, and those who cannot see past your differences are not worth your friendship. Surrounding yourself with people who are accepting of you is the only thing to do. If you are ever afraid to tell someone about a thing you might be insecure about, whether it be an ostomy or a scar, remember confidence is key. Being secure and sure of oneself is a beautiful thing.
I remember a social worker asking me during a stay in the hospital if I had the choice to be born without my tumor, would I take it. I had thought about this question before, and I replied with the answer I always came up with: no. Some people might not understand my choice, but I still stick to my answer. I am proud of the person I am today, and I know I wouldn’t be nearly as appreciative of the small things in life if I had been able to avoid these experiences. Along my journey, I was introduced to a wonderful group of people at a young age who taught me the importance of keeping an open mind. I learned the value of a community and appreciating uniqueness in a person. Sure, I’ve dealt with pain and personal doubt, but I also realize those doubts are experienced by everyone at some point. They are what make us human.
I think that life is a miracle, and I couldn’t be more thankful to experience its ups and downs. Every obstacle has given me a greater appreciation for what I have rather than what I don’t. Not everyone would see having 18 surgeries, wearing casts and a back brace, and having limited nerve sensation as experiences they might embrace, but I do embrace them because I have no choice. These all have shaped me, but they do not define me. I am my own person, and while I might not have chosen this life, I can choose how to live it.
Erin lives in Pittsburgh, Pennsylvania, USA
© 2016 Erin Kavanagh, Ostomy Canada & Courage to Shine™
E-mail Erin at Erin@courage-to-shine.org
Please read Courage-to-Shine.org disclaimer!
Triumphing Over Exstrophy
By Mindi Plumley Thayer
I was born on April 17, 1982 at 3:43 pm. I was the first child of two for my parents Dale and Nina Plumley. At birth the doctors thought I had a hernia. When they went in to repair the hernia they discovered that I had classic bladder exstrophy. At that point the doctors were in over their heads so they sent me to Seattle Children’s Hospital.
Over my 34 years I have had numerous surgeries. I was incontinent and wore diapers through kindergarten. Before first grade the doctors made me a stoma and I had an ostomy bag. In the fall of the fourth grade Dr. Mitchell had a plan. He would put a cuff on my urethra and I would be able to push a button to release the cuff and I would urinate. I was incredibly excited about this prospect. I would urinate like everyone else! Upon completion of this final surgery as I woke up from the anesthesia I was told that things did not go as planned. Instead of the cuff system I had a catheter system. I know would urinate from a catheter from my bellybutton. I was devastated to say the least. But over time I learned to accept and embrace my new way of urinating.
Making friends in school was difficult. I was always afraid the other kids would find out about my difference and not want to be friends with me. In kindergarten I remember the kids calling me baby because I wore diapers. I remember the teacher having me stand in front of the kids and tell them why I was different. I managed to make a few good friends during elementary school. But middle school and high school was much more easier for me to make friends. I made many that I still see and talk to often.
It wasn’t until middle school that I really blossomed as a person. I met and started dating my future husband in the 7th grade. And by high school I had finally and fully accepted the way my body worked. My freshman year I wrote and presented a report on bladder exstrophy. During my time in high school I would repeat my story many times in front of a variety of audiences. I even presented in a competition setting for a club I was involved in. I learned through these experiences that everyone is different and we need to celebrate these differences.
During high school I attended the United Ostomy Associations Youth Rally. Until this time I felt isolated because I had not met anyone that had exstrophy. I met so many people that had similar stories and even more difficulties. I felt very blessed and encouraged after my first trip. I couldn’t wait for the next youth rally. I attended the youth rally for four years. I made lifelong friendships that are dear to my heart.
After high school I went on to attend Eastern Washington University. I achieved the highest level of education of anyone in my family. I currently hold a bachelor of arts in special education and one in education. I am currently one student teaching away from being a birth to 21 special education teacher.
My parents and family never treated me differently. I was made how I was made. They just made sure that I always had the proper tools at hand. I was held to high standards and made to feel like I could achieve anything I put my mind to.
On April 12, 2003 I married my middle school sweetheart, Joshua Thayer. A few years after our marriage we wanted to start a family. We tried many years unsuccessfully. I saw a specialist and was told because of endometriosis harvesting an egg would be next to impossible. And due to a prolapsed uterus carrying a child would also be extremely difficult. We were shattered but didn’t give up hope entirely. We knew that one day we would have children; we just didn’t know how.
Eventually we ventured into foster care. We knew there were children out there who needed loving homes and that the state would assist in the adoption process. On September 25, 2009 we got placement of a brand new baby boy. At the time we didn’t know he would be our forever child. But on February 4, 2011 we were able to adopt him. We named him Kaden J. Thayer. A week later we received a beautiful four-month old girl into our care. Two years later on September 26, 2012 she became our forever daughter. We named her Miah Leona Thayer. We were done adopting but we continued to foster other children. On December 10, 2014 we received our daughters’ half-sister. We thought we were done adopting, but we are currently waiting for the adoption process to start with her.
Yes, I was born with exstrophy. But I don’t let it define me. I am a daughter, a wife, a mother, and a friend among other things. Having exstrophy kept me from having a normal life. But it didn’t keep me from having a wonderful life. I can write my name in the snow. Not every woman can say that.
© 2016 Mindi Plumley Thayer & Courage to Shine™
E-mail Mindi at firstname.lastname@example.org
Please read Courage-to-Shine.org disclaimer!
For information about TEDx Syracuse University go to Amy’s Webpage
Turning Adversity into Gratitude
By Amy Oestreicher
I’ve been called a surgical disaster, a medical miracle, barely alive to the energizer bunny that just keep going.
It was the night of our family Passover Seder – a favorite holiday of mine, reminding me of Spring, renewal, redemption, and good things to come. As always, there were 30 joyous and over-stuffed friends and family surrounding us, carefully reading along with a Passover Haggadah that my dad and I had put together ourselves, based on our favorite Spring quotes, inspiration and passages. As always, we told the Passover story with our mouths full of laughter, song, brisket and kugel. As always, I felt snuggly embraced by the love and warmth of the people in my life and the safety of a time-honored family tradition. And then I felt something that I had never experienced before.
A stomach ache. A simple stomach ache that escalated into excruciating pain, never ceasing and only growing worse for two entire days. As the pain grew more and more intense, my father drove me to the emergency room for a routine x-ray, although my physician reassured us that it was only gas. On the way to the hospital, (as my mother has told me) my cheeks suddenly puffed up like a chipmunk, and I collapsed as soon as I tried to get out of the car. Then I don’t remember anything else but the physical sensations of awful pain. All I remember is gradually waking up about six months later.
I suffered a coma, a ruptured stomach, and underwent a total gastrectomy. When I awoke from my coma, I was told by my doctors that my stomach exploded. I couldn’t eat or drink, and it was not known when, or if, I’d ever be able to again. With the expertise, audacity and innovative thinking of surgeons from seven hospitals, many 19-hour surgery marathons, and multiple shifts of nurses and doctors, I was miraculously reconstructed with the intestines that I had left. Over time, I made slow but steady steps towards recovering my “personhood.” I learned to sit upright again. When my tracheostomy healed, I started to talk. Once my hands were no longer shaky from the medications, I began to write and doodle. With time, patience, resilience and persistence, the “me” I remembered started to come back — the “me” that 26 surgeries could never take away.
By 2012, I felt like I had finally made the “great comeback.” I had written, starred and directed myself in “Gutless & Grateful,” a one-woman musical about my life. I was happy, healthy and had an ostomy. But everything is better in retrospect. At that time, I felt I was happy and healthy, but I had an ostomy. So I took a risk. I underwent an elective surgery to reverse my ostomy. Unfortunately, this elective surgery turned into three emergency surgeries within eight days, an ileostomy, a nicked bladder, a fistula, and a wound that will never close.
When my bladder was nicked during surgery, a whole new layer of complications were now added.
Now my nicked bladder was leaking into an open wound, which was not allowing the wound to heal. which was irritating it and not allowing it to heal. Doctors now searched for more medical accessories attached to various openings in my body to divert the urine from my wound. Nurses would try to raise my bed on a slant so the fluid could bypass my open stomach, but nothing seemed to work. That’s when the wound-vac was introduced and probably one of my most traumatic memories. Many visits to radiology, stents, x-rays and CT-scans later, nothing was getting better.
The wound vac was exactly that – a machine that was hooked up to my wound, literally vacuum packing it, trying to suck all of the liquid put in order to dry the wound. In order to make this possible, there could be no room for any molecule of air to get through. This required an arduous process that could take up to sneak hour, of putting enough layers of very specialized gauze into the large cave of air wound in my belly, making sure that everything was completely air tight.
When you are dealing with an imperfect wound, that has varied slopes, alcoves, corners and ridges, getting an airtight seal us near impossible. However, that didn’t prevent us from trying every day. There was a very exact procedure to thus, with about 20 steps. There was a layer of styrofoam, then sponge, then gauze, then a variety of different plastics, wrappings and tape. By the time the dressing change was done, I would be layered with so much gauze that my stomach looked like a Baked Alaska, with a tower of foam clumsily taped to my abdomen.
My bladder would take months to fully heal after many rounds of ultrasounds, charcoal tests and various interventions before it finally healed. When we were discharged from the hospital months later, the first thing we did was go to the mall and pick up a purse t carry around my catheter in. The following months were filled with pain, as the catheter pulled with every twist and turn I made. On top of this, my days were spent stuffing diapers with hand towels in the unsuccessful attempt to get my wound to stop draining. My life was unmanageable. It was hard to feel like a person separate from what my medical situation had become.
It was so overwhelming and traumatic to try to figure out how to put a bag over this gaping wound — this wound that now functioned as a second ostomy. Then, Tina, a very generous nurse with a truly compassionate heart, visited me at my home. Previously, I had been unwilling to receive any outside input. But after weeks of stuffing towels around my abdomen, I knew I had to come to terms with the idea that this wound needed a big intervention.
This was a very big deal to me. It was my acknowledgement that this surgery, that I had chosen, was truly a setback. And I had no idea how I would make a comeback.
Things did get better. They got better because I was determined to make them better. I applied to college at 25. I booked two theaters to perform “Gutless & Grateful” again — updating the show with the 27th surgery for a little comic relief. I created an online dating profile for the first time, and I met the love of my life. From years of trying to keep my head up while being so isolated, I was overwhelmed with loneliness all at once. I was fresh out of the hospital and didn’t have a community of people my age I could just go out with at night and be social with; no way to leave this medical thundercloud behind me, even just for a few hours of relaxation. I had no expectations and nothing to lose, so I set up an online dating profile for myself using the first dating site I remember someone mentioning. I found the love of my life a week later, and we married in June.
I made a comeback, and I felt alive once again. Then, one day, while I was at school in Amherst, Rolf Benirschke, the founder of the Great Comebacks Award, called me personally. I was so thrilled; I could hardly speak. This was the first time I was really recognized for what I had been through medically, as a true survivor.
As Brandon and I flew to the Great Comebacks Ceremony in Nashville that year, I couldn’t help but smile. With time, the body can heal. And even with wounds that haven’t fully healed, I’ve grown stronger. The Great Comebacks ceremony brought this to the forefront for me. Not for my performance, my mixed media art or what I was doing in the community, I was being recognized for being a resilient, strong and proud ostomate.
I had never known how to talk about my ostomy. I didn’t know what an ostomy was until I had one. Part of me felt like it was “not something you talk about.” Even though I was never told this, I felt there was some kind of stigma, like I should be ashamed. Part of me felt like an outcast, like no one had what I had.
I met a beautiful fashion model, a dancer, a teacher, a nurse, inventors, warriors, enthusiastic, vivacious amazing souls. And — something very foreign to me — they were so proud of their ostomies, and grateful that their ostomies enabled them to lead such happy, healthy and full lives.
Great Comebacks was an amazing opportunity to be honored. So much of my own story had taken place in the dark, unknown to the outside world. Nobody knew how I’d spend hours in the bathroom changing my bags every morning. Nobody knew how, when I was unable to eat or drink for years, I’d lock myself in my room for every waking hour and journal. I avoided being exposed to the outside world where normal people could eat and drink freely. It felt wonderful to be honest, and to share what coping with my medical situation was like for me. It also felt wonderful to gush about my father, a doctor who worked tirelessly to advocate for my health and save my life.
The more ostomates I meet who proudly embrace their bodies and situations, the more I’m inspired to change my entire view on myself, and how I view self-acceptance and self-love.
Throughout these eleven years, I’ve been strong, determined and willing to do whatever it took to stay alive. I’ve dealt with tubes, bags, poles, you name it. And if this ostomy and a fistula is all that I’m left with after everything, then I am truly grateful. More than that, I thank my ostomy for enabling me to live life to the fullest, to my fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality and life.
27 surgeries later, I’m eating, drinking, married, in college, gutless and grateful for life. That’s why in 2012, I took all of those old journal entries, combined them with song – some I had written, and one that David Friedman and Kathie Lee Gifford wrote especially for me, Still Alive, and created Gutless & Grateful, my one-woman autobiographical musical.
My show dared to explore a very personal topic – what could have been a tragedy – in a comedic, yet poignant musical – the culmination of years of struggling in the dark, and the spark in me that refused to die. It told my triumphant survival tale in a way that inspired many theatregoers and prompted them to rethink the ways they live their lives. Together we experiencing how by telling stories, we can become empowered in any uncertain circumstance and get through anything. To quote a line from my show:
“They say that everything happens for a reason. But that’s not always true. Sometimes, you have to make it happen. I think about my old life, and I miss it. I miss the simplicity and straightforwardness of it. I look at old pictures and I miss the innocence, the joy, the carefreeness in my eyes. I can’t be 13 again but I can be the best 28 I can. But sometimes I wonder what life would be like if this never had happened –This is not the path that I planned for myself – but does anyone’s life ever work out exactly how they plan it? I was led astray, and hurt, and betrayed, and dehumanized, taken apart and put back together, but differently. But my passion never went away. I kept my hunger alive. Now I know that my role in life is still to be that same performer I always wanted to be when I was 13. But now with an even greater gift to give. A story to tell. “
When I started sharing my own story, I realized that I wasn’t alone. Other people were struggling with what I had faced in isolation for years – shame, fear, PTSD, anxiety, depression, loneliness- I wanted to encourage people to start speaking up, and bring marginalized voices into the spotlight. Only when I was finally able to share my story could I truly heal, and now I want to encourage everyone to start sharing their stories.
Through sharing our stories, we become empowered, inspired and more comfortable with our life circumstances, as well as with who we are. That is why I turned Gutless & Grateful into a mental health advocacy program. Sharing our stories starts the conversation for others, and brings out the stories that unite us all, to show that creativity is an essential mindset, a survival skill, and a way to see the world.
With every obstacle, stories help us find a new opportunity. Stories saved my life. Sure, I have wounds, scars, and some medical issues that still haven’t been resolved. But if I took away all of the setbacks, hurdles, frustrations and detours, I wouldn’t be who I am today. Telling my story made me realize that. That’s what inspired me to share my story with the world, and call this my “beautiful detour.”
IN fact, it’ the name of the book I’m working on, which hopefully will be out by next year! A detour is many things – unexpected, a nuisance, difficult, hard to grapple with, frustrating, – but it can be beautiful.
Now I want to inspire people to flourish because of, rather than in spite of challenges. That’s why I started the “Detourist” movement, which is also the subject of my TEDx talk on April 16th. #LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life.
That’s why I’m spreading #LoveMyDetour around the world. I’m trying to start a whole movement to show that we all have things come up in life that may surprise us, but they don’t have to derail us. I’m proof of that myself! And what I’ve experienced is, the more stories we hear about turning an obstacle into an opportunity, the more empowered we are to transform our own lives and have confidence that when life DOES surprise us, we’re capable of getting through anything.
Today, I have used my “detour” to inform who I am as an artist, writer, and performer (and newlywed!). I’ve been performing my one-woman musical, Gutless and Grateful for four years across the country, not only to theatres, but also as a mental health and sexual assault prevention program. This month I’ll be performing it as the Keynote speech for the Pacific Rim International Conference on Diversity and Disability. Performing Gutless & Grateful for nurses, patients, hospitals and support groups has been an amazing way to both share my story and empower others.
We all have detours in life. I hope my detour shows that it is possible to turn adversity into creative growth. On my site amyoes.com, I have a weekly Why Not Wednesday feature, where a Detourist shares how any detour in life has made them who they are today. Although everyone’s detour may be different, I believe we all heal when we share the universalities behind the obstacles in life. Together, we’re stronger.
As a Detourist, I look for where that “wrong turn” in my life may lead me to.
The good part is that everyone has had an unexpected detour one time or another, and the best guides are thestories we hear. Have a detour you want to share? Check out ways to share with the #LoveMyDetour community here!
- What’s a Detourist? Learn more here!
- Share your detour!
- Read other Detourists’ stories
- See the #LoveMyDetour art/photo gallery
- College Detourists: Bring#LoveMyDetourto your campus!
- Like our Facebook Page
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for The Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress, and playwright, eagerly sharing the lessons learned from trauma and has brought out the stories that unite us all through her writing, mixed media art, performance and inspirational speaking.
As the writer, director and star of the Gutless & Grateful, her one-woman autobiographical musical, she’s toured theatres across the country, earning accolades since it’s BroadwayWorld Award-nominated NYC debut. As a visual artist, her works have been featured in esteemed solo exhibitions, and her mixed media workshops emphasize creativity as an essential mindset.
To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others cope in the face of unexpected events.
As the 2014 Recipient of Convatec’s Great Comebacks Award, Amy is a passionate voice in the ostomy community, founding an online community, speaking for National WOCN conferences, and writing for the official publication of the UOAA. She is a regular lifestyle, wellness, and arts contributor for over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, Seventeen Magazine, among others.
She has devised workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Foundation, League for the Advancement of New England Storytelling, Mental Health America and others, and is this year’s keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability.
To improve student mental health, Amy developed a program combining mental health advocacy, sexual assault awareness, PTSD education and Broadway Theatre for college campuses.
Amy is currently touring the country with her one-woman musical, Gutless & Grateful, keynote presentations, workshops and signature talkbacks, with specialized versions for corporations, college campuses, survivors, healthcare professionals, and artists.
See more at amyoes.com.
Speaking to Healthcare/Nursing or Patient Care: amyoes.com/patient-care/
E-mail Amy at email@example.com
Please read Courage-to-Shine.org disclaimer!
Kinder than Necessary
By Caelin Mooney
My name is Caelin Mooney, I am 22 years old, a future child life specialist, an advocate for children and families, a Godmother, a sister, a cousin, a niece, a daughter… the list could go on and on with labels that pertain to me. Along with all of these other titles, I identify with having classic bladder exstrophy. Growing up, it was ingrained in me that Exstrophy was not who I was, this was something that was a part of my everyday life, and it was normal. I believe I had a normal childhood for the most part, except for a few bumps in the road.
I was born in Albany, New York to my parents who I’m sure were ecstatic to welcome their first child into this world. Little did they know chaos would erupt after my birth, when I was born I was sent to a hospital across town and was followed by my dad and aunt while my mom recovered from delivery. My grandmother immediately called her favorite priest and had me baptized soon after my birth–leading to the fun fact that I’ve been baptized twice! This began our process of figuring out the best way for me to live my life with exstrophy. I think we have done pretty well so far!
We had a smooth beginning with the excellent care of Dr. William Cromie. Once he decided to take a job out of state, we experienced a few failed surgeries with doctors who were not experienced with the complicated procedures associated with exstrophy, nor were they child focused. After my parents were done being a part of studies, and experimental procedures, they began to research care and realized they had choices. They were led to Dr. John Gearhart at Johns Hopkins Hospital. After meeting him, they immediately felt at ease and trusted Dr. G with all of my care. Needless to say my parents are amazing advocates and supporters of mine. During this time we attended our first picnic and Dr. G. introduced us to the Fisher family from North Carolina. I thought their accents were amazing and they called us a “bunch of Yankees” to which I would dispute that we were Red Sox fans. Rachel is a year older than me and had so much confidence with her success at being dry and “cathing” through her stoma. She showed me how she cathed, explained how easy it was and that she could mostly do it on her own. It seemed like a lot of work, but much better than wearing pull ups all the time. Later that school year I decided this was for me. I was sick of having to hide my pull ups, be embarrassed about going swimming, and just generally self-conscious.
We went to Hopkins the following summer and I had a 12-hour surgery to fix what needed to be fixed, and got my stoma. Dr. G. even sewed on a button at my stoma site to give me my very first “belly button”. We spent a majority of the summer in Baltimore, either at Hopkins or the Children’s House. It was a tough road to recovery, but in my mind I remember forcing my dad to play Adventureland, much to his dismay, over and over again. I remember going outside with the Child Life Specialist, Gina, and shooting targets with syringes. I remember listening to the Shrek soundtrack over and over again on my Mary Kate and Ashley Walkman. I remember going to the zoo with my brother and cousin in 100* heat. My parents did so much to keep me occupied that most of my memories are positive ones. Another special person was introduced to me at this time–Gina, a Child Life Specialist. She did a lot of teaching, procedural support, and what I thought was just entertainment at the time. I would later learn this is an actual career!
After everything was settled and I had made a full recovery, I resumed my normal life of sports, fighting with my little brother, spending time with my family and something new, cathing. Cathing was a tough adjustment. My mom invested in a watch that would beep when I had to cath at school, which I was sure the kids in my class would notice. We developed a plan to make sure I was successful, and did it properly. One thing that was cool about cathing at this time was I pretty much had fair game on any bag, purse, or storage item I wanted. But other than these things, my parents encouraged me to do everything all the other kids were doing. I played CYO basketball, summer league softball, had sleepovers and went on to play varsity sports, as well as college tennis. In high school I think I felt more different than other kids, but looking back that is probably just my teen self-talking. No one knew I was any different. I was very nervous about the locker room and gym class, and changing, but I found ways to make it work. Everyone my age was worried about these things, it is a part of being a teenager. My parents were amazing advocates and supporters and I think most of my “normal” childhood has to do with them encouraging me to step out of my comfort zone and not “rescuing” me from normalcy.
During all of this time of personal growth, it was getting close to the college search. I thought I wanted to be the next Theo Epstein. So did every other Red Sox fan. Once I looked into the coursework for this career it wasn’t really clicking. Then I thought, no I want to be Bob Ryan and write for the Globe. Journalism was a tough and dying field. My dad and I were sitting around a campfire and he said something along the lines of, “Kids love you, you love babysitting. Why not work with kids? I bet you could use your experiences to help people like Gina helped you.” Up until this point I never thought that what Gina did was an actual career. I did some searching during my study hall and found a college that was in Boston and offers the best Child Life program in the country. I decided that was it. After visiting and being accepted to Wheelock, I had never been so excited about anything in my life. I immediately signed up to volunteer at the local hospital with Child Life just to be sure it was something I was comfortable with. Moving to Boston was the greatest decision of my life. It made me grow as a person, both with my exstrophy, and personally. I had to figure out how I would get my supplies to Boston, what I would tell my roommates, and if I was ready to take exstrophy as well as regular college stuff on.
It turns out college was the choice for me, I’m an avid runner and am able to run laps around Fenway Park, it was a dream! Now my only other task was to figure out how to spend my summers. I began to work at the Double H Ranch in Lake Luzerne, New York. This camp was founded by Paul Newman and Charlie Wood and provides a week of residential summer camp to children with life threatening and serious illnesses. This was also the place for me. I have never felt so empowered, loved, and passionate about anything before. This just reaffirmed my choice to be a Child Life Specialist.
Through all of these major life changes, exstrophy was rarely an issue. I recently had minor surgery, but that was just another small hiccup I had to deal with which reminded me I have this thing called exstrophy that sometimes interferes with my life. I know love lives are a “hot topic” with exstrophy teens and young adults, and I am now with a loving man who supports me through everything, including my last surgery. I am an independent person, a growing professional, and always strive to be my best self. I believe exstrophy definitely has caused some struggles in my life, but it has also led me to have amazing experiences, find my passion and learn to work hard for what I want. I have followed my dreams, and encourage everyone to do the same, be kinder than necessary and always shine bright.
© 2016 Caelin Mooney & Courage to Shine™
E-mail Rachel at firstname.lastname@example.org
Please read Courage-to-Shine.org disclaimer!
Embracing Bladder Exstrophy
By Jessica Sanchez
My name is Jessica Sanchez. I am 26 years old, born and raised in Washington State and I was born with classic bladder exstrophy. But bladder exstrophy is not who I am, it’s just a part of me. I am a daughter, a sister, a mother, a wife, a teacher, and a Christian. I love to dance, lead worship at my church, have family game nights, and watch my daughter grow. My experiences with bladder exstrophy have been both hard and rewarding. What may have seemed like a hardship at the beginning of my life; turned into a beautiful journey that I wouldn’t change for the world.
On March 30th, 1990 my parents welcomed their 1st child into the world; a 7 pound 10 ounces baby girl. Shortly after the delivery, the nurses took their little girl away to examine her. After much confusion and a considerable amount of time, the doctor walked into their room with a textbook and said “I think this is what your daughter has.” The doctor gave my parents the choice to have me flown to Seattle or Spokane. Because we had more family in the Seattle area, my parents chose Seattle. I will forever be grateful for that decision. I was then flown to Seattle Children’s Hospital where world renowned surgeon, Dr. Michael Mitchell, became my doctor and did my initial closure at only 1 day old. My mother was not able to fly with me to Seattle due to an intense labor/delivery so my grandmother flew with me. Now that I am a mother, I can’t even image the emotions my mother and father were experiencing.
Growing up with bladder exstrophy definitely had some moments that were easier than others. I had 3 major surgeries and 5 minor ones all before I was 12 years old. Although the surgeries were hard, wearing tubes for weeks after surgeries wasn’t fun, and having to always be aware of the nearest bathroom was tedious, my parents never treated me as though I was different from any other child. They gave me the mindset that I could do anything I put my mind to and to not let bladder exstrophy hold me back. My younger brothers and I were treated the same, I just had to go to the bathroom more and have more doctor appointments. In elementary school I only told a few close friends about my bladder because I had to wear pull-ups at night. I still had lots of sleepovers and had friends over a lot. The more confident I became with myself, the more open I was about my exstrophy. My mom was asked to write a few articles about her experience as a mother with an exstrophy child over the years. She even contributed to the Living with Bladder Exstrophy book written in 1996. My story was also in an article in Connections magazine, a Children’s Hospital magazine, in the summer of 2003. Having this birth defect became something positive in my life, not a burden.
When I was a year old my family became a part of the NW Exstrophy Support Group through Seattle Children’s Hospital. This support group got together once a year for a camping trip and also planned fun activities during exstrophy conferences. As the years went on, my mom became very involved in the support group and helped lead it throughout my childhood. During these support group events, I got to meet and build relationships with multiple people who could relate to what I was going though. Even though all our experiences were different, it was comforting knowing people with the same condition. It was always fun to share stories and compare our man made belly buttons or lack of a belly button. While I was young, I got to look up to older women with exstrophy and when I became older; I became someone younger girls could look up to. I have so many fond memories of those summer campouts and still keep in contact with a lot of people in the support group.
Thanks to the power of prayer and my amazing doctor, I never had to use a catheter and have been able to empty my bladder on my own. By the age of 16 my bladder had grown to an average size (thanks to all those Kegels) and my bladder neck had become stronger. I was told I wouldn’t need to worry about my bladder until I was pregnant and only then we would need to monitor it and I’d need a C-section. Throughout my childhood, I was very active in my church and I was devoted to dance. When I was a teen, I had the opportunity to speak at 2 different conferences honoring Dr. Mitchell. It was such a privilege to be able to share my story and help honor a man who has devoted so much time to my life and the lives of exstrophy children around the world. To this day, I still keep in touch with him.
I married my husband Philip in October 2012 after dating for 5 years. I was very fortunate to find a man who has been so patient and understanding with me and my medical issues. Throughout our relationship, he has never lost faith that my medical history would prevent us from having the life we’ve dreamed of. In October of 2014 we got the exciting news that we were expecting our 1st child! I was able to have a somewhat normal pregnancy which was one of the best experiences of my life! However, it was very nerve-wracking not knowing what to expect when it came to her delivery. Two weeks before my due date, I went into labor and started dilating naturally. Due to the amount of scar tissue I had from my surgeries, my doctors didn’t want me to dilate all the way because they were afraid I would begin to tear the further along I got into labor. So that night I had a C-section. In the OR we had my urologist on standby in case something went wrong during the procedure. We welcomed our beautiful little girl, Adalynn Rae, into the world on May 30th, 2015. Thankfully the surgery was very successful! Since my body had naturally gone into labor, my bladder was completely out of the surgeon’s way and they were able to deliver her without affecting my bladder! Adalynn has been such a blessing in our life and we hope the Lord will continue to let our family grow in the future.
When I was first asked to write my story, I felt like my story wasn’t eventful enough. I haven’t had 30+ surgeries and I haven’t had to use a catheter; but then I thought about all the new mothers and fathers who would be reading this, scared and unaware of what their child’s life would be like. I want to let you know, your child will be just fine! Your child is beautiful, smart, and can do whatever he/she puts their mind to! Encourage your child through the hard times. Celebrate with them during the good times. Love them unconditionally! They will be able to live that life you dreamed they’d have while you were anxiously awaiting their arrival into this world. Embrace this birth defect as a blessing because soon enough they will be the ones sharing their stories and touching many lives.
© 2016 Jessica Sanchez & Courage to Shine™
To contact Jessica you can do so by emailing her at email@example.com
Please read Courage-to-Shine.org disclaimer!