In January of 2022, my husband experienced an extended and isolated hospitalization from COVID-19, which compromised his second kidney transplant and left hemodialysis as his only treatment option until another kidney transplant becomes feasible. He began dialysis while in the hospital, and after discharge he continued treatment three times a week at a local clinic with 4:30 AM start times. For three years, this routine shaped our days until he made the decision to transition to home dialysis in September 2025. As we move into this new chapter together, I have found myself learning alongside him with confidence, nerves, and even laughter at my “nursing skills”, which, in many ways, my years of facilitating medical play with patients as a CCLS helped prepare me for. We have come to realize that chronic illness reshapes daily life in expected and surprising ways. More than anything, this journey has reminded me that the principles of family-centered care are not abstract ideals; they are what families need the most and what child life specialists practice every single day.

Education as Empowerment

When my husband began his month-long home dialysis training, I assumed it would focus solely on him as an adult patient. After all, he is the one undergoing dialysis treatment, and I’ve learned over the years how different adult care can be from pediatric care. However, to my surprise, the nurse invited me to sit beside him, to watch carefully, to ask questions, and eventually practice the steps myself. She didn’t just teach him; she taught us. That inclusion transformed my role from passive supporter to active partner. Instead of standing on the sidelines, I felt equipped with knowledge and confidence and even prepared for challenges or worst-case scenarios.

This experience reminded me of the heart of child life work: education that empowers. As child life specialists, we prepare children for medical experiences in ways that give them control and confidence. We explain, demonstrate, and invite participation so that both patients and their families can understand what to expect.

Just as I felt relief and courage from being included in my husband’s training, I’m reminded that while education can empower families in pediatric settings, not all have access to the same supportive experiences. This gap highlights why child life work is so essential.

Child life practice is grounded in evidence and experience, demonstrating time and again that preparation and education make a difference for patients and families of all ages. These same principles can extend across disciplines, reminding us that psychosocial care is not limited by age or setting but is built through connection, communication, and inclusion.

Reminder: Every time you teach, prepare, and empower a child or their family member, you’re doing exactly what matters most.

Emotional Support is Essential

Even with knowledge and practice, the emotional side of chronic illness can never be overlooked. As I practiced setting up the dialysis supplies and handling needles, my emotions shifted many times. I experienced pride when we mastered a new step, worry about making mistakes, laughter at my clumsy fistula taping skills, and moments of quiet when the reality of this new routine set in. What made those emotions bearable was the way our nurse created and maintained space for them.

Whether that was answering questions, validating our concerns, or encouraging us throughout the process, she empowered us.

This, too, is the work of child life. Medical education gives patients and families information, but emotional support helps them process and cope. Child life specialists sit with children who are scared, acknowledge the tears of parents who feel helpless, and offer comfort through play, distraction, and presence. These moments are not small; they are essential. We remind families that their feelings are normal, they matter and are not alone carrying them.

Reminder: When you acknowledge emotions and create coping spaces, you are shaping resilience. You are doing the work families will remember.

Family-Centered Care in Action

Perhaps the most powerful part of this journey was how my husband’s care team consistently treated us as a unit. They recognized that dialysis at home would not just affect him, but it would affect both of us. By including me, they honored our partnership. By asking for my observations, they valued my voice.

This is what family-centered care looks like in practice: acknowledging that illness impacts more than the patient, and that support systems are not optional but essential. Child life specialists embody this philosophy every day. We invite families into the process. We advocate for their presence. We model inclusion in spaces that could otherwise feel intimidating or clinical. We remind healthcare teams that families are not visitors, but rather, are central to their child’s care.

Reminder: Your advocacy and modeling of family-centered care isn’t just philosophy...it's practice that changes lives.

Carrying the Lessons Forward

As my husband and I begin this new routine at home, I am struck by how much it mirrors the values that child life specialists uphold. The education that gave us confidence, the emotional support that steadied us, the family-centered approach that empowered us-these are the very pillars of child life.

And so, I want to offer this reminder: you are already doing what works. The education, preparation, and inclusion you provide each day embody the heart of child life work. These are the same principles that turned my husband’s and my fear into confidence. What works is not always a perfect script or outcome. Instead, it is the intentional presence, compassion, and partnership you bring to each family encounter. I have come to understand that what families may remember most is not the perfection of a moment, but the feeling of being seen, heard, and supported; just as the nurse did for us. Those moments of reassurance can transform fear into courage and uncertainty into trust.

In the day-to-day, it can be easy to feel stretched thin or to wonder if your efforts are enough. However, from the perspective of someone living on the other side of healthcare, let me assure you that your presence and your support matter. Families carry those lessons, the support, and the advocacy with them long after the hospital stay ends.