Monthly Archives: April 2016

Caelin Mooney – Kinder than Necessary


Kinder than Necessary

Caelin Mooney

Caelin Mooney

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.

Screen Shot 2016-04-08 at 10.56.47 PM (1)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!

Caelin with Dr. Gearhart

Caelin with Dr. Gearhart

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.

Caelin Mooney

Caelin Mooney

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!

IMG_5827 (1)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.


IMG_0090 (1)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.

IMG_1159 (1)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.

IMG_0872 (1)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 caelin@courage-to-shine.org

Please read Courage-to-Shine.org disclaimer!

Caelin Mooney along with her father and mother

Caelin Mooney along with her father and mother

Caelin Mooney along with her boyfriend

Caelin Mooney along with her boyfriend

 

Categories: Courage to Shine News, Inspirational Stories, Role Models | Tags: , , | 3 Comments

Rachel Fisher – Turning Fear Into Confidence


Turning Fear Into Confidence

Rachel Fisher

Rachel Fisher

By Rachel Fisher,

My name is Rachel Fisher, I’m 23 years old and I was born with classic bladder exstrophy.  My life began in New Bern, North Carolina in 1992.  My medical experience started with an immediate closure, reclosure and bladder neck reconstruction.  Unfortunately, at age four I developed blockages in my ureters.  My doctor in North Carolina wanted to plug my ureters into my bowels because the blockages were damaging my kidneys, making a solution necessary and urgent.  My parents weren’t convinced it was the best solution and starting researching doctors all over the U.S. and it led them to Dr. Gearhart at John’s Hopkins.  I became a patient at Hopkins at age four when I underwent a major surgery that created a neobladder utilizing my intestines and a mitrofanoff utilizing my appendix.  My stoma is located where my belly button should be and I was told to catherize every 4 hours.  I then became the youngest patient of Gearhart’s at the time to cathertize myself in October 1996.  This was my biggest surgery; I was in Baltimore for 6 weeks total and 4 weeks in the hospital recovering.  I remember spending Halloween there, how hard it was to learn how to walk again after lying in bed for

Rachel and her mom at Johns Hopikins Hospital in Baltimore, MD

Rachel and her mom at Johns Hopikins Hospital in Baltimore, MD

weeks and staying at the Children’s House with other kids.  After the major surgery I had two more within 9 months and my dad was frustrated with not being able to help me.  I can’t imagine my parent’s experience.  Honestly, everything I just said about my early years of life affected my parents much more than it did me.  I have only a couple of memories of being in the hospital and never any of being in pain.  Since then I have been healthy and happy, only having two minor surgeries, one in middle school and one in high school.

Outside of the times I spent in the hospital, I lived a completely typical childhood.  When I wanted to do something, I never thought that I couldn’t because of bladder exstrophy.  It might have been a concern for my parents but I was never aware.  I never felt like I was treated differently than my siblings or my friends.  I participated in a variety of activities such as gymnastics, dance and t-ball but committed to soccer and played my whole life on competitive travel teams.

Caelin and Rachel with Dr. Gearhart at Johns Hopkins Exstrophy Picnic

Caelin and Rachel with Dr. Gearhart at Johns Hopkins Exstrophy Picnic

Although I didn’t consider bladder exstrophy a huge issue in my daily life as a child, I still enjoyed bladder exstrophy picnics every summer in Baltimore was something I always looked forward to attending. When I was around 6 years old, I asked my mom “Why didn’t my brothers and sisters have bladder exstrophy too?”.  She responded by trying to explain how rare the condition was.  I immediately came back with “No you’re wrong! Didn’t you see all of those kids at the picnic?”.  From the age of 6 I never felt alone.

I made friends there I still speak to on a regular basis.  I even showed my friend Caelin at a picnic how I cathed when I was 8 and she was 7 years old.  She was currently incontinent and my parents and I shared my success with a catherizable stoma and then Caelin had the surgery that year.  Our parents were close and we all still keep in touch.  I wouldn’t have the friendships I do with other bladder exstrophy patients

Rachel and Her Brother

Rachel and Her Brother

today if my parents didn’t make the effort to connect with other families experiencing the same thing.  At the picnics every year, we break out into small groups and talk about issues we are dealing with.  Most of the talks consisted on the topics of body image issues and romantic relationships.  Opening up about our bladder exstrophy specific struggles was therapeutic for all of us.  It was the only place in the world where everyone around me identified with me and understood why I felt uncomfortable in certain situations.  One of my friends told us when people asked about her scars she just told them they were results from a shark attack.

During my teenage years I was angry with my parents for being grounded a lot, but I also became angry that I had bladder exstrophy, something I didn’t think about as a child.  One of the hardest parts of growing up with bladder exstrophy for me was wearing a bathing suit in front of my friends.  I always hated the moment I had to take my cover up off because my friends would see my scars.  It was the only time where everybody around me knew I was

Rachel with Her Father

Rachel with Her Father

different.  I wanted so badly to feel the same as everyone else.  I didn’t think it was fair that I was born with bladder exstrophy and my friends were born typical.  I wish I knew then that every teenage girl has self-esteem issues when it comes to wearing a bathing suit in front of her peers.  It is a completely normal part of development.  However, I still am not completely confident in a bathing suit but have made a lot of progress since my teenage years.  Last summer was the first time I wore a bikini around all my friends.  I wish I would have been braver and realized that the anxiety about people seeing my scars is so much worse than what actually happens.  Most people notice it for a minute and move on and a few ask questions.  Nobody is rude, and the more I talk to people about it, the more self-confident I have become.

Rachel and Her Mom at college graduation

Rachel and Her Mom at college graduation

Another issue that comes up for me frequently is the problem of forgetting my catheter.  Every time I forget it, or lost it, I become very angry because I have to go home or get a ride to my car where an extra was located.  I think the anger comes from being mad at myself for forgetting it but mostly because it a reality check that I am different.  Nobody else has to worry about if they have medical equipment to pee.  They can literally be anywhere and can pull down their pants to relieve themselves.  I wish I had that freedom.  I wish I didn’t feel so helpless when I left my catheter somewhere and couldn’t use the bathroom until I located one.  Looking back on it, I could have avoided many of those situations by placing extra catheters everywhere.  Storing multiple catheters in my purse, car, and friends’ houses is very necessary and something I’m still learning.

Telling people about bladder exstrophy has been difficult but I am getting better at it.  I have known most of my friends since early childhood or middle school.  I told most of them when I was so young it was before the embarrassment of being different set in.  When I tell

Rachel rock climbing in Peru

Rachel rock climbing in Peru

people now, I usually tell a shortened version and I am not ashamed anymore, if anything I am proud.  I fill them in on how my bladder was exposed when I was born and random surgery stories but I typically leave out how I use a catheter.  The last new friend I told was in amazement, in a good way.  We were at a party and she wanted to go to the bathroom together, like girls do, and I thought to myself “Whatever I’ll just tell her, I have to pee and don’t feel like making something up to avoid using the same bathroom as her”.  She thought it was so cool that I could pee through my “belly button” and was so honored I told her.  She knew that I trusted her because I told her and our friendship became stronger after that night.  I was reminded once again, the anticipation of sharing information or showing my scars to people is so much worse than what actually happens.

I was very lucky to have grown up in a small town with so much support from my parent’s friends and my friends.  I felt safe knowing most people that knew me growing up knew about my condition.  My best friend since we were babies was always concerned about how often I needed to use the bathroom or if I had a catheter or not.  For example, we were involved in a car accident

Rachel spending time with her foster kids

Rachel spending time with her foster kids

when we were 16 and rode in an ambulance together to the hospital.  We had both been knocked unconscious and were delirious during the ride.  The EMT’s were asking us questions like “Are you allergic to any medicines?” and “Do you have any pre-existing medical conditions?”.  I answered “No” to both questions.  My best friend, on the stretcher beside me, says very loudly “yes she does! Rachel, tell them about your bladder!”.  This is a perfect example of why you should let your friends know so they can help you.

My dad passed away my senior year of high school.  I have a very specific memory of him that embodies how much he built my self-confidence.  We took a family trip to beach when I was young, maybe middle school, and I wore a regular bikini, so my scars were all showing.  I remember my dad telling me “That’s my girl” and “I’m so proud of you” with a huge grin on his face.  I will never forget that feeling of making him proud for not being ashamed and wearing whatever I wanted.  I still think of that every time I feel insecure about anybody seeing my scars.  I was raised a brave, confident girl and will continue to be one.

Rachel speaking at the 2015 International Bladder Exstrophy Conference in Seattle, WA

Rachel speaking at the 2015 International Bladder Exstrophy Conference in Seattle, WA

I strongly believe the best two things my parents did for me was constantly increase my self-esteem and connect me with the bladder exstrophy community.  I cannot say enough how confidence building and support from my family, bladder exstrophy friends and friends from home, has helped me cope with every new difficult situation along the way.

I have developed a passion over my lifetime for traveling and helping others.  I have had two jobs working with individuals with special needs.  I lived and volunteered in Peru for two months and participated in sometimes-dangerous experiences, such as the rock-climbing and paragliding.  I have found helping

Her Mother and Dr. Reiner with Rachel at the 2015 International Exstrophy Conference

Her Mother and Dr. Reiner with Rachel at the 2015 International Exstrophy Conference

others and living life to the fullest is something I have in common with the other BE young adults that I’ve met over the years.  I think each person I’ve met with bladder exstrophy is uniquely empathetic because of our experiences and are overall incredible people.  I would love to be able to work with children with medical conditions and continue to contribute to the bladder exstrophy community.  I gave a speech at the Association for the Bladder Exstrophy Community International Exstrophy Conference in Seattle, WA in August 2015.  It was an amazing experience to be able to tell my story and feel as if it gave some of the parents hope about their children.  I received my bachelors of psychology and am currently a foster parent for a non-profit organization, Casa de Esperanza de los Niños, in Houston, Texas.  I have cared for seven children so far and fell in love with all of them.  I have recently been accepted to the masters program for social work at the University of North Carolina and will be start to pursue my degree in August!

© 2016 Rachel Fisher & Courage to Shine

E-mail Rachel at rachel@courage-to-shine.org

Please read Courage-to-Shine.org disclaimer!

ABC Medical Interview in Houston, TX posted April 23, 2016

Categories: Courage to Shine News, Inspirational Stories, Role Models, Uncategorized | Tags: , , , , , , , | 3 Comments

Blog at WordPress.com.

%d bloggers like this: