By Jennifer Wheaton, CCLS, Child Life Specialist at Connecticut Children’s
In honor of Child Life Month, Connecticut Children’s Child Life Specialist Jennifer Wheaton shares a special message of thanks to the patients and families who have taught her about true love and what it means to be a hero.
I can say with confidence that I have the best job on the planet. Hands down. I am fortunate to be one of the Child Life Specialists in Hematology & Oncology here at Connecticut Children’s, a job that to me is so much more than a job. When I was asked to write a blog post in honor of Child Life month, I wasn’t sure at first what to write about. The suggestion was made to perhaps write about what a “typical day” was like for me bouncing between the Outpatient Hem/Onc clinic and the inpatient floor, and while that might be educational and eye opening for some, I thought that instead I would take the opportunity to thank my patients and families who are without a doubt, the greatest teachers of my life and who make it a joy for me to come to work every day.
To my patients and families….
Thank you for letting me be a part of your journey. For some of you reading this, your journey with your child who has cancer or a blood disorder may just be beginning, for others it has been years. Years of clinic appointments, of inpatient stays for low blood counts, pain crises, trips to the Emergency room. Hundreds of port accesses, CT scans, specialty appointments, countless hours of waiting for results that could bring sighs of relief or unbearable heartache. It’s not a journey that you ever would have willingly signed up for, but every family I have met through my work here has navigated through these things with grace and fortitude. It is incredibly inspiring to watch the outpouring of love and support that you show your children, and in turn, your families, friends, and communities show you. It’s heartbreaking and awe inspiring all at the same time to watch parents pull up cots next to their teenagers beds on MS8 and camp there for days, weeks. To see you come in for admissions with suitcases filled with the comforts of home, wall stickers, bed sheets, anything to turn a hospital room into a place where a little girl or boy can still be just that. To celebrate the last chemo treatment with cake, a balloon, and the “Happy Last Chemo” song.
Thank you for letting me teach you a little bit about your child’s illness, but throughout their illness, thank you for letting them teach me about life. Many of you may recall the first time that I met you and your child, I usually introduce myself and say “I’m kind of like a teacher, but I teach about the hospital.” I would then follow that sentence with a conversation explaining that an IV is a plastic straw that gives your body a drink, or I may have brought in a doll that has a port in its chest and allowed your child to be the nurse if only for a moment and let them access the doll, put on the dressing, and flush the port. I may have prepared you and your child for surgery, showed you pictures of the operating room, explained to your child how we would use “special medicine” to help them fall asleep, and maybe I held your hand or gave you a hug after you put your full trust in our team and walked out of the operating room with me, leaving your sleeping child on the OR table. I may have even had that conversation with you and your child that is every parents worst nightmare, explaining how sometimes “cells in our body misbehave and grow very fast and out of control” and that is called cancer. I may have used mini marshmallows to represent cells, letting your child stick them together forming a ball, a representation of a tumor that had grown in their tiny body. I may have used a felt bone and explained how bone marrow has red cells, white cells, and platelets and let your child apply each of these things haphazardly onto the bone as we talked about what happens when your body has too many of one of these things, or not enough of another.
In these moments with you and your children, I hope that I gave you some information or tools to help you navigate this new and oftentimes uncertain journey that you were on. But like I said, it pales in comparison to the lessons that you have taught me. Your children teach me every day as they bounce into our clinic with smiles on their faces despite needing chemotherapy or blood transfusions, or having disease that makes it painful to walk, how incredibly powerful and resilient the human spirit is. They teach me about the true meaning of bravery every time they talk themselves into another port access by taking deep breaths and uttering sweetly “I can do this” while looking for affirmations from you, and from me that indeed they can. They teach me about the meaning of friendship, as they begin to interact with kids in the playroom, kids who are all there for different reasons, and yet they share an undeniable bond with one another. Sometimes they kindly ask each other why they are there, sometimes they don’t, as if they don’t even notice IV poles, bags of blood or chemo, pain pumps, or wheelchairs. It doesn’t matter to them that some of the kids don’t have hair due to their treatment, or that some kids may talk or walk differently, to them they are playmates and new friends. Your children teach me to appreciate the seemingly little things in life that are truly the big things. The first day back to school after a year away due to treatment, the first day out of isolation following a bone marrow transplant, the spur of the moment trip to the park taking advantage of a “good day” where they feel well, and their counts are high, and their spirits are boundless.
And you, their parents and caregivers, you teach me about the meaning of love. Of true love. I know, because I watch you every day, I know that you would go to the ends of the Earth and beyond to make your child well. I know that if it were possible, you would trade places with them in a heartbeat. I watch as you navigate the journey of getting your child through their disease, a journey that has no manual, and no certain course. At times feeling powerless to help them, frustrated, angry, sad. But also feeling pride at your little wonder who just learned at 3 years old to swallow their chemo, or who got through their bone marrow aspirate without tears, singing “Let It Go” as sedation meds were pushed and they drifted off to sleep. I imagine that there are many of you who barely sleep while your child is undergoing treatment, you worry, you Google treatment options, you watch your child sleeping in a hospital bed wishing they were home. You are my heros. Your children are my heros.
So I thank you for letting me be a witness to the incredible joys and pain that come from your journeys with illness. Thank you for allowing me to sit with you and teach you about cancer, or sickle cell, or thalasemia, or HLH, or any number of illnesses that may have brought you through our doors. Thank you for letting me bring in toys, or bubbles, or a dance party into your hospital room, so that maybe, just for a few moments, your child can forget why they are here. Thank you for being my life teachers, you inspire me and are what makes my job great.