Getting away is hard for couples raising a medically complex child

How do you get away when you’re the caregiver of a medically complex child?

Between appointments, medications, school, and the constant responsibility of keeping your child safe, a simple overnight trip can feel impossible. Caregiving often leaves little room for rest, connection, or spontaneity, and couples may find themselves functioning more like a medical team than partners.

These couples endure high levels of chronic stress, but the need for time together doesn’t disappear. For my husband and me, time alone together has been rare (no pun intended) over the last 16 years. Our son, Jake, who’s living with two rare genetic disorders — Prader-Willi syndrome (PWS) and neurofibromatosis — is amazing, but getting away as a couple has been difficult. Often, it’s easier to just take him with us wherever we go.

Jake is funny, stubborn, deeply social, and thriving as a sophomore in high school. He also needs structure, supervision, and someone who understands that his world runs best when the day is predictable and food is managed with care. It means ordinary parenting asks — the neighbor kid’s older sister, a last-minute babysitter, a friend who says, “Go, we’ve got him” — have never really been available to us.

So when our daughter offered to fly home from California to stay with him, we did not treat it lightly. This is the second time she has done this. She knows her brother in the particular way siblings do — the humor, the routines, what a hard morning looks like. She has taken on the role of PWS sibling with grace and understanding. When it all comes together, she hands us back something we rarely get: the chance to be a couple instead of a care team.

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What getting away actually requires

People who have not lived this sometimes imagine our hesitation is emotional — separation anxiety, guilt, overprotectiveness. However, the barrier is mostly logistical, and it is enormous.

Before we leave, we build what amounts to an operations manual with the following: the daily schedule, hour by hour, including after-school routines and bedtime; meals, including what, when, how much, and where it is stored; medications, with doses and timing; therapies; extracurriculars; the homework routine; and more. Then there are the behavioral supports: what escalation and de-escalation look like, which phrases help and which ones do not. Next are the emergency contacts, with numbers for the pediatrician, the specialist, and the pharmacy. Insurance cards are also important, as is the contact at school. Finally, there is the prework: confirming weekend plans in advance so he has something to look forward to, walking him through the calendar so the change doesn’t surprise him or cause more anxiety.

Learning to leave is a skill. We are still practicing and tend to wait until the last minute to talk about a trip because we know with PWS there will be numerous questions about every detail.

None of this is complaining. It is simply the arithmetic of caregiving that most families never have to do, and it explains why so many caregiver couples go years without a weekend alone, and why many marriages don’t last.

Why the helpers matter so much

Our circle of people who can step in is small. It’s not because we lack loving friends, but rather because this kind of care asks for competence, not just goodwill. It asks someone to hold a lot of information and take it seriously.

The ones who say yes anyway are like oxygen. That is the only word that fits. They don’t just give us a weekend; they give us room to exhale, to remember who we were before the diagnosis, to have a conversation that isn’t about logistics. Caregiver burnout isn’t caused by love running out. It’s caused by never getting to set the load down. The people who help us set it down are, quite literally, keeping us upright.

Here is the part that still makes me a little emotional: We were getting away to co-host a couples retreat for We Are Brave Together, an organization that offers extraordinary resources for caregivers raising children with unique health needs.

I’ve wanted to create a space for couples for several years. And because I know exactly what it costs a couple to walk out their own front door for 48 hours, I didn’t take their attendance lightly.

The retreat sold out in two minutes. That is not a marketing win. That is a signal flare. It tells you how many parents are carrying this same weight, how rarely they get relief, and how quickly they will grab it when someone finally builds it for them. The need is not a hypothesis. It is a waiting list.

So, last month, I held space for couples who have each written their own version of that operations manual. I know what they went through to get there. And through it all, I was eternally grateful for a daughter on a plane, a son who was safe at home, and the handful of people who make breathing possible.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.