A Parent of a Medically Complex Child Shares Her Journey
Written by Molly Warneke
When my son was born, he was quickly whisked away for medical attention. I told my husband not to leave his side, and I was left alone. A nurse would check in occasionally, asking, “How are you doing?” as she entered data into the computer. “Fine. I’m fine,” I’d say. That was the correct response, right? I was a mom now—I needed to be strong.
That moment marked the beginning of our journey with a medically complex child. Now, five years later, we navigate countless medical appointments for his congenital heart defects, Heterotaxy, feeding tube, autism, developmental delays, and speech disorders. Through it all, I’ve learned that exceptional care isn’t just about medical expertise, it’s about genuine human connection and recognizing the emotional toll on families.
“How are you?” is a simple yet powerful question. When our care team takes the time to genuinely ask and listen, it reinforces our commitment to choosing care providers who consider and support all aspects of our well-being, both medical and emotional health. Yet, this kind of support isn’t always the norm in medical settings. Why not?
The Roadmap for Emotional Health Project advocates for integrating emotional well-being into medical care. It emphasizes that clinicians don’t need specialized mental health training to ask how caregivers are doing and connect them with resources as needed. A brief, empathetic pause for clinicians to acknowledge a family’s emotional needs can ease the already overwhelming medical experience. It helps normalize the intense feelings I experience as a caregiver of a medically complex child. This leads to being more open and trusting with our care team.
Just as doctors refer patients to specialists for medical concerns, they should also recognize and address emotional health needs. By highlighting the importance of normalizing these conversations at every medical encounter, The Roadmap for Emotional Health Project empowers families and clinicians to work together in fostering emotional well-being—before a crisis arises.
Having an organization that provides resources and a script for me to advocate for the importance of my family’s mental health is invaluable. It’s one less thing on our plate. This project gives me hope that caregivers and families can receive emotional healthcare proactively, leading to more connection and trust, and an all-around better patient, family, and staff experience.
