“I’m Moving Mountains That I Once Had to Climb” Journey of a Child Life Specialist Overcoming her Medical Challenges

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I am so delighted to share one of my former student’s journey to becoming a child life specialist. I have been so inspired by her strength and you will too.

Guest Blogger, Torie Miele 

My journey as a child life specialist started when I was a kindergartener and I walked into career day as a nurse. I loved teaching other students about what all the medical supplies were and how to listen to their heartbeat, but knew that I never wanted to give shots. My passion for medicine and helping others grew with me, until my senior year of high school when I was shadowing a music therapist at Children’s Hospital of Philadelphia. There, we met a child life specialist. It was as if this job was specifically made for me: medicine, teaching, kids, compassion, creativity. I re-routed my plans for music therapy to focus on becoming a child life specialist. At the time, I had no experience in the hospital, except visiting my pediatric nurse mom and going on home visits with her. I had no idea that the hospital would become a familiar place for me, just not in the way I wanted it to.

I was a very healthy typical individual through my freshman year of college. I was independent, had my first real relationship and then out of no where BAM, I was in a terrible car accident which left me with uncontrollable vomiting, dizziness, and awful confusion. Fast forward to 9 months and the vomiting never stopped, although my headaches faded.  Eventually I was diagnosed with a chronic stomach illness called gastroparesis a disease that means “paralysis of the stomach”. This disease causes delayed digestion, which results in symptoms of severe pain, nausea, vomiting, malnutrition and loss of appetite.

Over the past 9 years, I have had multiple feeding tubes, PICC lines for IV nutrition, and the placement of Medtronic’s Enterra therapy, a gastric neurostimulator. The stimulator works similar to a cardiac pacemaker, sending shocks into the stomach muscles to simulate peristalsis or the muscle movements that help push food through the stomach. They aren’t exactly sure how or why the device helps nausea symptoms, but it has been seen to diminish symptoms of vomiting and nausea in some gastroparesis patients. I am one of the lucky ones which it has helped greatly. I have had to have the stimulator replaced 3 times due to malfunctions and will need to have it replaced every 7- 10 years.

I have been tube and central line free for almost 3 years thanks to the device, a strict Torie friendly diet, and alternative medicine techniques. This does not mean I live symptom free. Every time I eat, I am uncomfortable and have to fight to not get sick. I constantly take anti-nausea medication and have learned to navigate food very carefully. Sometimes, my gastroparesis will flare, causing uncontrollable vomiting and pain which lands me in the hospital for treatment. Flares can hit for no rhyme or reason and last for long periods of time. I live with fear of flares, but all in all have been blessed with stable health, filled with running, yoga, working full time, and training service dogs.

My medical journey is a roller coaster of events and emotions. Living with a chronic illness is a tough road to drive. There are no maps, but there are many unmarked detours, tons of traffic, and my car has a habit of overheating at the worst times. But, having a chronic illness has only cemented my destination: to become a child life specialist.

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I found I would often child life myself. During a month long hospital stay, I developed a coping strategy that I coined “pages of positivity” where each day I would write a positive from the day, a strength that I had, something I was thankful for and a dream. I taped them to my walls, along with drawings from my visitors and photos of my nephews.  My room became a unit favorite, walls completely covered and music always blaring. I collaged images of swim suit models with feeding tubes to help normalize and beautify my new medical equipment. I drew My Little Ponies, Sponge Bob and Minions with picc lines and g tubes. I wanted to be okay with my new body.

My illness has shown me first hand the importance of the voice of a patient. I used my voice with my medical team, researching and speaking up about treatment options or quality of life concerns, which has strengthened my skills when it comes to advocating for my patients as a child life specialist. It also showed me the importance of support and knowledge during all hospital experiences. Multiple times, I signed consent forms for procedures I did not understand. At 22 years old, I was still a kid who needed support. I would requested nurses to sit with me during my overnights because I hated being alone in the hospital. I also had friends bring in coloring books and card games because I was so bored. It awakened the desire to create a “Hospital Life Specialist” for adult wards, someone who has the ability to explain medical procedures and provide support in adult hospitals because adult patients should be just as supported as pediatrics.

Torie's Post

Right Photo, Sophie Mayanne from Behind The Scars Project

Getting through college and child life training while struggling with my own illness was very difficult. During my child life practicum, I had a near fainting episode and was admitted with a heart rate which dropped into the 20s. When I was able to restart my practicum, I was on a 24 hour a day tube feed with my giraffe backpack in tow and my g tube set to drainage. One particularly embarrassing day, my G tube opened in the elevator, soaking my white skirt a very unpleasant shade of yellow.

With the bad, also comes good. One day, while sitting with my fellow students for lunch, a little girl kept staring at me. Her mother apologized saying “She has never seen anyone else with a tube before.” To which I answered, “Sometimes, big people’s bodies need some help too.”

Some things that I’ve learned on my journey is to find your passion and follow it. Research, network, problem solve, and work your butt off to keep that passion alive. I have never felt more fulfilled then when I am doing child life work, and all that hard work and dedication is the only reason I was able to get my title. I had many people tell me to give up, try something else, but I never stopped pursing my goals.

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Dedication is important, but another large lesson I had to learn the hard way it to listen to your body and work within its constraints. It’s okay if your journey takes longer then others. Its okay to not get an internship your first time, to ask for extensions on papers, to take an extra semester. Each person’s body and mind are different and in the end, that extra time will just be a better opportunity for you to learn. If your body needs a break, take it. Your body is a miracle, not a machine. Work with it, not against it. It has taken me a long time to not be angry at my stomach for being so slow. But the energy I put into hating my body was energy I could have been putting into working towards my goals and building myself up. You need to be your own best friend and cheerleader.

The journey to child life specialist has been one of the most difficult ones I have ever encountered. It took so much time, money, dedication, and drive. But it has taught me so much about myself and my work. I have the ability to stand with a family in their darkest hour, just as I have stood in my own, and provide them with light.

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Be sure to listen to Torie’s podcast interview with Child Life on Call.

You can also contact her at Torie.miele@gmail.com and follow her on Instagram at @Storiesoftorie.

2 responses to ““I’m Moving Mountains That I Once Had to Climb” Journey of a Child Life Specialist Overcoming her Medical Challenges

  1. Awesome story about an amazing human being! So honored to be a witness to a potion of your child life journey.

  2. Pingback: A Letter to Child Life Students; Finding Hope After Rejection | Child Life Mommy·

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