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.

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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 caelin@courage-to-shine.org

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