My son Gideon is almost 12 years old. He is funny in that sharp, unexpected way that catches you off-guard. He is deeply expressive and full of life. He gives love and joy more freely than most kids his age. He is curious and social. He is healthy, and I am grateful for it. We are endlessly proud of who he is.

And, our family constantly walks the edge of breaking under the weight of his care.

When Gideon was born with congenital cytomegalovirus (cCMV), our lives instantly reordered around his medical needs. He lives with more than 42 coded medical diagnoses. Cerebral palsy. Epilepsy. Deafblindness. They have accumulated over time. He has type 1 diabetes (a bonus diagnosis not related to his congenital infection). Gideon requires 24/7 medical support, which is provided by my husband and I, except for the hours when he is at school. When Gideon is not at school, we sometimes have home health nursing. But home- and community-based nurses are hard to find, hard to keep, and underpaid.

Sometimes, my husband and I feel more like coworkers keeping a household running, rather than partners building a life together. In the long stretches when we don’t have breaks from caregiving, our jobs become our breaks. Outside of the work week, we use each other as respite. Which means we rarely get time together, alone.

Before Gideon was born, we had built our lives in Vermont. Within six months of his diagnosis, we realized that the services Gideon needed simply didn’t exist. Not in our state. Not in my home country of Canada. To keep Gideon safe, we uprooted everything we knew and moved across the country to Arizona, where we discovered Ryan House, a pediatric respite care home that changed everything.

For families like ours, respite care is not a luxury. It’s not a “nice-to-have.” It’s life-saving.

Respite care for caregivers isn’t about taking a break. It’s about surviving the work of love.

Too often in medicine, clinicians underestimate the energy it takes to sustain caregiving. Even good clinicians, the ones who see our child in the exam room as a whole person beyond his diagnoses, often don’t acknowledge the 24-hour cycles of vigilance, seizure monitoring, suctioning, feeding, insulin management and care coordination that happen between visits. For some families, surveillance extends to behavioral interventions as well as medical safety.

All of that exceptional care falls to parents.

Behind every medically complex child is a family system running on exhaustion. Parents become full-time case managers, nurses, and advocates, while also trying to hold down jobs, nurture siblings, and maintain relationships.

When clinicians truly understand respite, they begin to see caregiving not as a static situation, but as a longitudinal human experience.

The health of the caregiver is inseparable from the health of the patient.

Why respite care matters for the clinician-patient relationship

Respite care centers, like Ryan House in Phoenix, are not hospitals. They are homes filled with laughter, wheelchairs, and medical equipment, adaptive playgrounds, family photos, music, holiday celebrations, and joy. Nurses there know my son not just by diagnosis but by personality. They celebrate him, and in doing so, they make it possible for our entire family to recover our breath.

For clinicians, this means something profound: supporting respite is part of caring for the patient. When you ask about caregiver well-being, when you know where respite resources exist, when you normalize their use, you are practicing medicine at its most humane level.

Caregivers who are supported are better able to follow treatment plans. They communicate more clearly. They experience fewer crises. Their children are safer, and their relationships and mental health are stronger.

It’s a simple truth: when caregivers are cared for, the whole system functions better.

The gap in care and the opportunity

Today, fewer than ten children’s respite homes exist in the U.S. In a country with one million medically complex children, that’s a devastating statistic.

For perspective: the U.K., with a population one-fifth the size of the U.S., has developed 54 community-based children’s respite and palliative care homes. Based on population, the U.S. would need over 250 to provide equitable access.

This is where organizations like Children’s Respite Homes of America (CRHA) are stepping in to raise awareness and create models for replication. They’re working to ensure that every family of a medically fragile child has access to a safe, welcoming environment where their child can be cared for, and where caregivers can rest, recover, and continue to parent.

A call to clinicians

November is National Family Caregivers Month.

If you are a clinician caring for a child with complex needs, I urge you to see respite not as an “extra” but as part of your treatment plan. Ask your patients’ families:

• “Do you have respite care?”
• “How are you caring for yourself?”
• “What would make it easier for you to keep doing this safely?”

Your curiosity and compassion are not small things. They can change how a family functions. And whether they stay together under the strain of care.

Take the time now to find out more and join the movement to strengthen respite care efforts through Children’s Respite Homes of America and the National Center for Pediatric Palliative Care Homes.

The future of medicine depends on rehumanizing care.

That means recognizing that healing happens in families, not just in bodies.

Kathleen Muldoon is a certified coach dedicated to empowering authenticity and humanity in health care. She is a professor in the College of Graduate Studies at Midwestern University – Glendale, where she pioneered innovative courses such as humanity in medicine, medical improv, and narrative medicine. An award-winning educator, Dr. Muldoon was named the 2023 National Educator of the Year by the Student Osteopathic Medical Association. Her personal experiences with disability sparked a deep interest in communication science and public health. She has delivered over 200 seminars and workshops globally and serves on academic and state committees advocating for patient- and professional-centered care. Dr. Muldoon is co-founder of Stop CMV AZ/Alto CMV AZ, fostering partnerships among health care providers, caregivers, and vulnerable communities. Her expertise has been featured on NPR, USA Today, and multiple podcasts. She shares insights and resources through Linktree, Instagram, Substack, and LinkedIn, and her academic work includes a featured publication in The Anatomical Record.