Today felt like everything this life is, all at once.
Five appointments. Five hours in the car. Five copays. Waiting rooms where my girls sat patiently, like this is just part of their normal (because it is). Bloodwork that made my youngest so scared she passed out for the first time. An almost missed first school dance for my 12-year-old because Li-Fraumeni Syndrome doesn’t take a night off.
And somewhere in between managing schedules, holding their hands, and holding them in my lap, I found myself holding back tears. Not just because today was hard, but because this is what it means.
All of these pieces, on their own, feel manageable enough. An appointment. A long drive. A million dollars in copays and hospital bills. Hundreds of dollars in gas. Bloodwork. A missed event. But together, they start to tell the truth of it, what it actually means to parent children with Li-Fraumeni Syndrome while also navigating it myself.
Our first appointment today wasn’t even for them. It was for me, a follow-up on a cyst on my ovary. The girls sat in the waiting room, entertaining themselves, waiting for me to come back. What a childhood.
There’s something disorienting about that role reversal, where they’re the ones waiting on me, in a space that already asks too much of them. Doctor’s offices aren’t unfamiliar or occasional; fear isn’t hypothetical. It’s real, immediate, and heavy. And yet, almost paradoxically, they’re used to it. The routines, the pokes, the anxious waiting; they know the rhythm of it, even as it takes pieces of their childhood along the way.
By the time we hit the second hour of driving, I realized I hadn’t eaten much lunch. Somewhere in there, I was supposed to make a work call at noon but completely forgot. Between appointments, drives, and keeping the girls calm, there just wasn’t space to think about anything else. And then my mind wanders anyway. I worry I’m not doing enough at work, that I should make more space, more time, but how is that even possible?
Doctors appointments are no longer just routine check-ins; they’re full of questions that most parents might ask casually, but for us, every answer carries extra weight. Today I asked about growing pains: what’s normal, and what should make us worry. With Li-Fraumeni Syndrome, there’s always a heightened awareness, a quiet concern that any ache or twinge could mean something serious. It’s exhausting and relentless, this balance between letting them be kids and being vigilant for the things no child should ever have to face.
Charley, ever inquisitive, asked the geneticist why he’s always checking their reflexes and what it has to do with Li-Fraumeni Syndrome. I loved her curiosity, her way of trying to make sense of all of this, but it also hit me: even routine exams come loaded with meaning. Nothing is ever just normal. Everything carries the weight of a condition she didn’t ask for, but that shapes her body and her childhood anyway.
Later, she asked me a question I answer more often than I’d like: “Am I going to get breast cancer like you?” I answered honestly. There’s almost a one hundred percent chance she will. These are the kinds of questions I answer regularly, and each time it takes pieces of me with it.
I sit there, toggling between roles I never asked to hold at the same time.
Patient.
Parent.
Protector.
There’s no stepping outside of it to catch my breath. I’m trying to absorb my own fears quietly so they don’t have to carry them too. Trying to balance keeping them safe with giving them the childhood they deserve.
Later tonight, tucking my youngest in, she whispers, “Was passing out my fault?”
“No, baby,” I tell her. “Not your fault at all. Your body just got scared; it happens sometimes.”
And I realize that this, the questions, the fear, the need for reassurance, is just part of what childhood looks like for kids with Li-Fraumeni Syndrome. Even the moments that seem small, like lying in bed at night, carry a weight most children never have to carry.
Sometimes the sadness catches me in the quiet moments. The grief creeps in unexpectedly, even when I think I have it under control. Not because I’m failing, but because there’s no ending, no fix, no way to do this “right.” Just the ongoing work of showing up, holding them close, and trying to give them a life that feels both safe and real.
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