I’ve always used social media as a mental getaway. Until recently, I wasn’t someone who felt drawn to share my life publicly or curate it like the accounts I followed. I scrolled through posts for entertainment primarily. It all felt distant from who I was, so I never had a desire—or a reason—to participate in that way.
When I found out I was pregnant, I started following other mothers—watching their journeys through pregnancy and early motherhood. But not long into my own pregnancy, I realized my path wouldn’t look like theirs. Following an abnormal fetal ultrasound at 19 weeks, I knew this wouldn’t be a typical motherhood experience.
All of a sudden, I didn’t see my life reflected anywhere online. And for a long time, I thought that meant this atypical journey wasn’t meant to be shared.
I deeply craved connection, especially with other mothers navigating medical complexity; but I was afraid. Fearing judgment, misunderstanding, or unsolicited opinions about deeply personal medical decisions, I worried about how my daughter would be perceived. Privacy felt like protection. It felt like the safest way to shield something that was still so tender.
But over time, that same privacy became isolating.
I feared how others might see my daughter. I feared assumptions about her differences, and about me as her mother. My heart was tender. I was quietly grieving the version of motherhood I had once imagined, while also longing to connect with others who understood this unexpected path.
For a long time, I held both of those truths privately.
It took me over a year to feel ready to let even a small part of our story be seen publicly.
I didn’t start sharing because I felt confident. I started sharing because I felt alone. Eventually, my desire for connection outweighed my fear.
I began small. During a family weekend away, I documented what tube feeding looked like outside of our home. I shared during Tube Feeding Awareness Week—something personal and vulnerable, but not our whole story.
The response surprised me.
Some messages came from mothers walking a similar path, finally seeing themselves reflected. Others came from people who wanted to learn and better understand. And some were simply quiet expressions of support from people I hadn’t heard from in years.
Through that, I began to find a sense of connection.
The most meaningful connections haven’t come from likes or comments. They’ve come from private messages that say, “This feels like my life too.”
The community I have found isn’t loud—it was deep, real, and often private. It looks like DMs, text messages, and shared understanding. It looks like celebrating inchstones instead of milestones. It looks like connecting with other mothers and even medical professionals who understand both the clinical and lived experience of this kind of motherhood.
It looks like not feeling so alone.
But social media hasn’t been entirely easy.
As I began sharing more, I also felt a new kind of pressure—the internal question of “Should I film this?” or “Should I share this?” It started to pull me out of the moment and into documentation. My screen time increased. My mental load grew.
There are still days when it feels overwhelming—when I want to step back, delete the apps, and just be present without the noise or comparison. Sharing your story doesn’t mean it becomes natural or easy. I didn’t start sharing to build a platform or turn this into something bigger—I started sharing to build connection. And I’m still learning how to protect that intention.
Over time, I’ve found more of a middle ground. I no longer share to keep up—I share when it feels meaningful. I’ve shifted from obligation to intention: connection over performance, meaning over metrics.
I don’t share everything, and I don’t only share the good—but I share with purpose, because I want to help others feel less alone, create space for stories that don’t fit neatly into categories, and gently challenge assumptions while reducing stigma around children and families living different kinds of lives. I share to build the kind of community I once searched for. And maybe, by sharing a little more of our real lives, we can make that in-between space feel just a little less lonely.