December 2019
Every time I dried my eyes and took a deep breath, my eyes would swell again as I saw him through someone else’s eyes. Waves of emotion crashed over and into me as I visualized his mother, father, stepmom, stepdad, grandparents. If I felt a void in my heart with him gone, what were they feeling? Imagining this was overwhelming and I felt lost inside of myself. I was attempting to grasp a reality that was incredibly difficult to face. Scanning my memories of loss, I couldn’t find the means to understand or digest all my coworkers and I were feeling. Yet, allowing ourselves to feel was enough for the time.
They say that grieving is a process, but the loss of a 5-year-old boy to cancer doesn’t seem to fit the traditional five steps of grief. The words “denial, anger, bargaining, depression, and acceptance” seem awfully empty and logical. They lack the depth of emotion we felt as we grieved the loss of our patient. As this little boy’s Physical Therapist, Occupational Therapist, and Speech Language Pathologist, my coworkers and I learned that coming together to heal, learn, and support the patient’s family was one of the hardest things we’d have to do in our career. The complexity of this grieving felt like a two-part rollercoaster of emotions…
Anger
Anxiety
Suppression
Helplessness
Confusion
Then…
Release
Support
Exhaustion
Relief
Peace
Even still, these words lack depth. I struggled with offering compassion, sympathy, and support to my patient’s family and coworkers while internally processing what happened. As a healthcare provider, I felt I needed to maintain a professional façade: To know exactly what to say and do. But, my experience and logic fell short. My coworkers and I tried to hold back tears day after day. We weren’t sure if our emotions would be well-received. Over time, we had to let go. We had to face the fact that being a professional does not exempt us from being human. Our investment in the lives of our patients and their families became deeply evident as we hugged, cried, and grieved together.
A Battle with Cancer
My work as a Pediatric Physical Therapist is personally rewarding and fulfilling. I shy away from my family, friends, and colleagues who say it must be challenging to work with kids who have special needs. “I don’t know how you do what you do,” they’d say. I have dismissed these remarks countless times. How can I accept these words of sympathy when my work brings me endless joy, hope, and perspective? I do this work because I see every child as they are – a beam of innocent light. I see children who want to play, adolescents who want to fit in, and young adults who want to discover their purpose. Their physical and mental abilities have merely changed their options for this exploration.
A particular five-year-old boy had an imagination that far exceeded expectations for his young mind and created a world of pure magic. He imagined there were ghosts and animals in the room, made silly SpongeBob references, and would “RAWR” at me like a dinosaur out of nowhere (most of the time, I genuinely jumped in surprise!). There was no limit to his imagination, even when his physical body was undergoing treatment for pineoblastoma – a rare, aggressive form of cancer. Diagnosed in the beginning of 2019, he was following a course of treatment and things were really looking up! He’d walk on the treadmill, stomping his feet as he sang to “Girls Like You” by Adam Levine, or “Sunflower” by Post Malone. He’d ask to do the weights, holding onto dumbbells as he did bicep curls and shoulder presses – checking out his muscles after a few repetitions. He had a lot of energy and we laughed a LOT. I loved how silly we could be together – pretending to be Ninja Turtles or Gary, Patrick, and SpongeBob. No idea was too big for him.
After some time, things started turning for the worse. He went from walking, laughing, and running to wanting to sleep most of the day, vomiting, and spending most of his time in a wheelchair. In one of our physical therapy sessions, he cried in pain as we tried working on standing from the floor, using a chair for support.
My heart throbs thinking about that day. Seeing the shift in his body which had been getting so strong was heartbreaking. Over the next few weeks, my coworkers and I saw continued decline in mobility. We struggled alongside his family to understand the reasoning. Unclear MRI’s made it difficult to discern if it was a progression of his disease or related to his treatment. We saw glimmers of hope, feeling he could pull through…
In time, the options for treatment were limited. The cancer had spread and the prognosis was poor.
NOTHING prepared us in school or life to receive the news that the child we connected with so deeply passed away. When my coworkers and I received the news near Thanksgiving, we couldn’t explain the hurt we felt. We grappled with how and when to offer support to his family, while also being tender with ourselves and filling our cups.
Our team found that, through our togetherness, we could eventually heal and grow.
Creating emotional barriers is not something I am capable of. And, to be honest, I haven’t known a single pediatric provider who doesn’t share this quality. Working with children requires a certain level of empathy and passion: the ability to see innocence through the eyes of children who cannot communicate their needs, walk independently, or dress themselves. As pediatric providers, we are deeply connected to each other through our devotion to our patients and their families. Every day, we hear heartbreaking stories, support families as they learn of their child’s medical diagnosis, and guide them toward answers – even when we may not have the answers ourselves. We walk with these families and kids as they navigate the rollercoasters of life. We are together in celebrating new milestones (no matter how small!), to finding encouragement and hope during setbacks.
In the days surrounding our patient’s death, we continued showing up for work, seeing the same number of patients. We performed evaluations, received hard news, and supported families. We experienced a level of compassion fatigue. I knew I needed to look inward but didn’t know when or how. I went through the rhythms of work, feeling anxious, confused, and disconnected. Most of my evenings were quiet and reflective. I took the entire day on Thanksgiving to connect to my source and renew my gratitude for my life, health, and work.
Filling Our Cups
One week after we lost our patient to cancer, our team had a debriefing with Staff Support Services at Seattle Children’s. Beyond the loss of this particular patient, my coworkers and I have had a plethora of challenging cases in the last few months. The attendees were those directly involved in these cases (myself, two Occupational Therapists, one Speech Language Pathologist), our department manager (who set up the meeting in the first place), and our coworker (Abby) who is a Sports Physical Therapist.
When we walked into the conference room, there was a tablecloth, a basket of treats (chocolate, gummies, granola bars), and a wreath for us to decorate. The space felt welcoming and loose, rather than professional and stiff. It was a safe space, a sacred space. There, we opened our hearts and minds, sharing our most vulnerable emotions with each other. We were able to be freely expressive of the struggle, hurt, and questions we have. We were guided by our facilitator, and our 1.5-hour session left us feeling emotional, yet lifted.
As we talked about our emotions, we started the process of releasing and accepting them. We shared moments where we felt we didn’t show up as we should have. We shared the WHY behind our feelings of anger, confusion. Then… We shared words of gratitude for each other.
Our ability to be vulnerable with each other was healing. Sometimes, my coworker and I describe our conversations as passing a glass bowl back and forth to each other, to represent the fragility and emotional charge behind our vulnerability. When sharing a part of my heart with someone, it can feel like trusting them with a glass bowl. Sometimes, the handoff can feel hesitant and nerve-racking. Yet, it always feels smooth with my coworkers.
My coworkers care and want to understand – even if they aren’t directly impacted or experiencing the same thing as I am. The fact that Abby came to the meeting to reach an understanding of what we were going through (on a day she wasn’t scheduled to work!) was the biggest heart hug.
Working in a place where you I can SEEN and HEARD is something I didn’t know I valued until I had it. Sometimes, they say you don’t know what you have until it’s gone. Well… I didn’t know what I could have… until I HAVE it.
For all the group texts, hugs, schedule changes, and meetings, I am grateful.
For a manager who supports and encourages, I am grateful.
For a team that truly feels like a family, I am grateful.
Through this process, we learned to be gentle with ourselves and take time to practice self-love, even when our job demands that we constantly care for others. Having the physical and emotional space to do that is invaluable.
Gratitude in Goodbye
The weekend after our support meeting, my coworkers and I went to our kiddo’s funeral together. The ceremony beautifully matched his spirit. We wore dinosaur temporary tattoos as we greeted his father who was sporting a Teenage Mutant Ninja Turtles T-shirt, and his stepmother (wearing a dinosaur dress!). We watched videos of him from early in life and it was so wonderful to see him with hair, running, dancing, and playing just like I knew him. He was so cute – the NG feeding tube and bald scalp made no difference in his appearance. We even saw videos of him skateboarding – a skill he was just picking up before his diagnosis!
After the ceremony, everyone went outside and blew bubbles for him, warming up with SpongeBob’s bubble dance. It was perfect in every way, and I could feel him with us.
Seeing him in the open casket brought me a sense of peace that was somewhat unexpected. My coworkers and I walked up together to say our last goodbye. We never had the chance to see him in his final days, which brought us immense sadness. Yet, seeing him lying so peacefully, surrounded by his favorite things, was reassuring. Looking at him, I knew he was no longer in pain. He no longer required morphine, chemotherapy, blood draws, and MRI’s. He was free to run and play in a world of bubbles and pineapples under the sea – somewhere in Heaven above.
Weeping may stay for the night, but rejoicing comes in the morning.
Psalms 30:5
After the funeral, my coworkers and I went to get Pho and comfort food. We reflected on our memories with our patient and came up with a plan for the following weeks. We would continue to be gentle with ourselves, support each other, and grow. We connected deeply, sharing stories of our past, as we sipped tea and ate a healing, comforting meal. It is moments like these that ground me, reminding me why I do what I do – even when it’s really, really hard.
To All the Children and Families…
I am forever blessed to work with children on a daily basis, for their innocence constantly teaches me lessons. Their questions, curiosity, and sense of wonder is pure and inspiring.
On a deeper level, I feel the presence of God in the eyes of children. Though I believe God is everywhere and all around us – interconnected with the entire universe – I feel children come closest to fully believing, following, and living life as God intended. They have not yet filled their minds with doubt and are open to receiving life’s gifts and magic. It is their openness, creativity, and light that I connect to and learn from.
Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”
Matthew 19:14
We lost a boy on Earth whose imagination could transport you to a pineapple under the sea. Yet, this little boy gained strength and an eternal life of playing freely and without pain – running, jumping, and blowing bubbles every day. On Earth, we may have lost his physical body, but his spirit remains in my heart and the hearts of all those who were blessed to know him. I know in time his memory will fade, but his lessons will be eternal within me.
To all the kids and families I have been blessed to work with, from the bottom of my heart: Thank you for letting me be a part of your journey.
With love and gratitude,
Kristen ॐ
Please Note: No names will be shared in order to honor personal health information as protected by HIPAA. No photos were shared for the same reason. Thus, I apologize for the lack of photos and plethora of words in this post. Thank you for reading.
