A friend once compared raising children to getting an education: he said parenting through the high school years is like prepping for finals in your senior year of college. If that’s true, parenting a child with a rare disease, juggling developmental challenges alongside medical ones, is like defending a doctoral dissertation you don’t remember researching, let alone writing. And somehow, everyone expects you to have all the answers.

Part of defending that dissertation is the constant hypervigilance of rare disease parenting. Once you’ve watched your child face a life-changing medical diagnosis, you learn to stay on alert. You notice every symptom, every change in behavior, every little thing that seems “off.” It becomes your normal. And just when you begin to relax, there’s always another shoe waiting to drop.

I remember one such moment several years ago.

It was a beautiful early autumn afternoon. I had just returned home from my daughter’s nine-hour IVIG infusion and stretched across my bed, listening to the birds outside my window. For the first time that day, I felt at peace.

My cell phone rang in another room. I ignored it. Moments later, the house phone rang, and then the answering machine picked up.

It was the hospital.

I grabbed the phone. The on-call rheumatologist explained that my daughter’s labs came back, and her blood glucose was dangerously low. I needed to get her medically evaluated or buy a glucose monitor, check her blood sugar, and call back immediately.

So much for peace and relaxation.

Moments like this keep us, as rare caregivers, at the ready. And honestly? Some of that vigilance is necessary. It’s how we catch the low blood sugar, the new rash, the fever that means something more. But living in that state 24/7 isn’t sustainable. Over time, it leaves us exhausted, overwhelmed, and unable to enjoy the moments when things actually ARE okay. Vigilance should be one tool of many, not the entire arsenal.

So how do we stay attentive without letting hypervigilance take over our lives?

I’ve learned it takes intentionality, practice, and a willingness to loosen our grip on what we cannot control.

Here are a few small steps that can help:

1. Separate what’s necessary from what’s fear-driven. Ask yourself, “Do I need to do something right now, or am I worrying about what might happen?” Sometimes action is necessary. Other times, we can give ourselves permission to wait.
2. Create a plan, then trust it. Work with your child’s medical team to identify which symptoms need immediate attention, what can wait, and whom to call. A plan eases the pressure to anticipate every possibility.
3. Share the responsibility. Teach another trusted adult what to watch for and how to respond. You don’t have to be the only one who can manage your child’s needs.
4. Practice small moments of letting go. Start with five minutes. Enjoy your coffee, sit outside, or listen to music without mentally reviewing everything that could go wrong.
5. Remind yourself that rest isn’t neglect. Being a good caregiver doesn’t require being on high alert every second. Your child benefits from a parent who can recharge.

The reality is that rare disease caregiving requires a level of vigilance most people will never understand. We can’t simply turn it off, nor should we ignore legitimate concerns. But we can learn to tell the difference between being prepared and being consumed by fear.

After all, our children deserve to live beyond their diagnoses, and so do we.

The phone will ring again, and another shoe will drop. But we can be ready without being braced every second. So go ahead, let out that breath you’ve been holding. You’ve earned it.

By: Ronda Thorington, MA, LPC

November 2026