I recently took some time to reflect on the friendships I’ve built over my 31 years. Each one has its own place in the story of my life, full of peaks and valleys. Some were fleeting, appearing briefly before fading, while others have endured, weathering the storms and joys of life. But now, as I stand firmly in my new identity—a bereaved mother of a medically fragile, premature twin—I can finally say I’ve found my “people.” And the most remarkable part? I’ve never actually met most of them in person.
I first joined Reddit when my husband and I were trying to conceive our twins. I didn’t know anyone personally navigating fertility struggles, so turning to the internet felt natural. The TTC (trying to conceive) and infertility communities were active, supportive, and sometimes brutally competitive, as many women drifted away once they became pregnant. Being a faceless username in this space was freeing—I could share my hopes, fears, and frustrations with people who truly understood, while I waited for those elusive two pink lines.
Once I became pregnant, I found a subreddit tailored to my due date. There, I could talk freely about shared symptoms, dreams for the future, and plans for our babies. But when my pregnancy grew complicated, the group naturally narrowed into a smaller circle: moms preparing for extended bed rest, NICU stays, or uncertain outcomes. We became each other’s sounding board, celebrating small victories, sharing the stress of growth scan results, and offering guidance and encouragement as we made it further into pregnancies that often felt doomed. These women became my lifeline, the ones I leaned on as time stretched painfully on.
Among the thousands of women in this space, only a handful of us experienced the heartbreak of losing a child while still caring for a surviving twin. Our shared grief forged an unspoken bond—we understood the crushing despair and the desperate need for hope, reassurance, and impartial advice from someone who truly got it. Life had dealt us a hand that was cruel and unfair, but at least we weren’t facing it alone.
As our children’s journeys began to diverge, some of these friendships evolved, and while we still check in when possible, I realized I needed a community that could understand my new role as a medical caregiver for a child with complex needs. That search led me to Instagram, where I discovered a ready-made tribe. Women fiercely advocating for their children, managing night shifts on barely three hours of sleep, and memorizing reference numbers, caloric calculations, and FiO₂ conversions as if second nature. My people.
My friends now live all over the globe—Pennsylvania, California, Oklahoma, Washington, New Jersey, Maryland, Wisconsin, Texas, Canada, New Zealand, England, South Africa. Each brings a unique perspective on tracheostomies, medical fragility, prematurity, and child loss. Among them are mothers of surviving twins, babies smaller than a Coke can at birth, women who endured infertility treatments, and those who’ve stared at the screen with no heartbeat. Each story adds depth to my understanding of this world and reminds me I am not alone.
I can message them during the 3 a.m. night shift when exhaustion makes me feel like I’ll collapse, or when Lily acts strangely and I need to list symptoms and ask for advice. We exchange tips, share medical supplies, test products, and hold space for each other when the weight of this life feels unbearable. They are my hypewomen, my confidants, my therapists, and my anchor.
I can’t imagine my world without this online community. As trite as it may sound, social media has become a lifeline I never knew I needed. The world of medical fragility is isolating by nature, but together, we’ve carved out a small, mighty corner of the internet to call our own.
It still amazes me that I haven’t shared a room with some of these incredible people who have carried me through the most difficult season of my life. To my people—r/TTC_PCOS, r/Nov2018bumpers, r/NICUparents, #deadbabymoms, #rebeltrachmoms—thank you. You have given me the strength, knowledge, and confidence to navigate this life with my child, and for that, I am forever grateful.
