When we started seriously thinking about trying to conceive, I couldn’t picture it.
Logically, it made no sense to me. I had carefully and very deliberately built a life around my capacity and needs as a disabled, chronically ill, neurodivergent person. And having a baby meant blowing that all up in the most unpredictable way possible. Every time I tried to think it through, I kept arriving at the same conclusion: “lol, why?”
The wanting wasn’t something I could access easily or directly because the immediate changes to my life seemed to contradict what I had up to that point learned I needed to take care of my body. What finally helped was thinking way ahead into the future and I asked myself, “At 70, would I regret not doing this?” And the answer was a clear yes.
People told me it was worth it. That they couldn’t explain it but it was true. My brain wanted to understand that for myself, wanted to try the identity on, take it for a spin, see how it felt, but it just couldn’t. My brain hadn’t been changed by parenthood yet the way theirs had. I couldn’t make the decision from inside of the experience. I had to trust that they were right, and look far enough ahead into the future to find out what I actually wanted.
What I also couldn’t picture was what parenting would look like in my actual body. Like on a high pain day, when my SI joints make walking impossible, when my capacity is already stretched before the baby has even arrived. Every image I had of pregnancy and parenthood was for someone else’s life—someone without hEDS, without MCAS, POTS, PMDD, without all of it.
I kept coming back to the same big blank.
I’ve been thinking about that big blank a lot lately, and about the fear underneath it. Not just the surface fears (the sleep deprivation, the logistics, the medical system), but the one that lives underneath all of them:
“What if becoming a parent requires me to become someone my body can’t sustain? What if the life I’ve so carefully built around my capacity, the routines, the pacing, the hard-won balance, just doesn’t have room for a baby?”
That fear makes complete sense, because something DOES change. The expectation that everything stays the same when you become a parent is a falsehood, for everyone, disabled or not. Before we started trying to conceive, James and I did a parenting visioning and values exercise together (because we like to nerd out like that) and landed on something we could return to and connect to. A north star.
“We are choosing to change, and remain open to the unfolding of the unknown.“
We knew we couldn’t possibly know everything. We knew we were walking through a portal from which there would be no return, and we didn’t want resentment to show up later. We wanted a reminder that we chose this, knowingly, even when it’s hard. A reminder of our values for change, adaptability, curiosity, and openness.
Our little north star/mantra/whatever-you-want-to call-it doesn’t cure the fear. It obviously still comes up. But, it has given us a sense of agency rooted in our values for this huge life change that makes the fear easier to sit with.
If that fear lives in you too, whether you’re already a parent or pregnant, thinking about trying, or just starting to let yourself wonder if it’s possible, tell me where you are in the comments.
If you’re navigating the path to parenthood as a disabled, chronically ill, or neurodivergent person and you’re tired of piecing things together from content that was never designed for you…I made something for you.
The Baby Registry Nobody Made For Us is a free guide built from real disabled parenting community knowledge. It’s a starting point for preparing for a baby in a way that actually accounts for your body and your needs.
And if you’re looking for more than a guide, for an actual plan, built around your specific needs, with someone who has walked this path that’s what Body Compass™: Path to Parenthood is for.