“I recently took some time to reflect on the friendships I’ve had in my 31 years. Each has its place in the story of my life, replete with peaks and valleys. Some ran their courses quickly while others remain strong to this day. 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 met my ‘people.’ And the funny thing is, I’ve never actually met any of them.
I joined Reddit when trying to conceive my twins. I did not personally know anyone else struggling with fertility, so the decision to turn to the internet was an easy one. The TTC (trying to conceive) and infertility communities were very active, but also wildly competitive as women disappear left and right once pregnant. It was great to be a faceless name, supporting those who experienced the same ups and downs as I waited for my two pink lines.
Once I became pregnant, I joined a subreddit specific to my due date where I felt free to discuss my similar symptoms, hopes, and plans. Once my pregnancy became complicated, my Reddit subgroup then broke down further into the few other moms expecting bed rest or NICU time. We often commiserated about the results of growth scans, swapped questions for providers, and cheered each other on as we made it further into our seemingly doomed pregnancies. These few moms became my outlet and my source of strength as time marched on.
Of the 1,000+ women in this group, only a few of us lost babies. Like me, these moms each had another fighting for his/her life in the NICU, and just like me, needed the hope, reassurance, and impartial opinions of those in their exact situation. The hands we were dealt were absolute garbage, especially when compared to the others in the larger group, but at least we weren’t alone.
Over time, our children’s needs began veering in different directions. These women continue to be my friends and we try to remain in contact as much as our hectic lives permit, but I strived to find someone who understood my newfound role as a medical caregiver and the complex needs of my child.
I turned to Instagram, and there, right before my eyes, was a ready-made group of soulmates. Women who advocate with such ferocity for their children, who pull night shifts and live on 3 hours sleep, who know reference numbers and caloric values and fio2 conversions off the top of their heads. My people.
My friends live all over the world— Pennsylvania, California, Oklahoma, Washington, New Jersey, Maryland, Wisconsin, Texas, Canada, New Zealand, England, and South Africa, to name a few. They each offer a unique perspective into the world of tracheostomy, medical complexity, prematurity, and child loss. I have friends who have surviving twins, who have babies born smaller than a Coke can, who went through fertility treatments, who have seen that horrific screen with no heartbeat.
I can DM them on the night shift at 3 a.m. when I’m exhausted and trying to stay awake. Or when Lily is acting strangely and I need to rattle off symptoms. We share medical supplies, test out tricks and products, and listen when this life feels insurmountable.
They’re my hypewomen, my confidants, and my therapists. I couldn’t imagine a world without social media— as trite as it sounds, I have fully embraced this online community I had no idea existed a mere 10 months ago. The world of medical fragility is inherently isolating, but we have carved out a small but mighty corner of the internet to call our own.
It’s unfathomable to me I have not been physically present in a room with some of these most important people in my life. They have seen me through the most difficult season of my existence, and it is to them I owe my confidence in navigating this new life. To my people, r/TTC_PCOS, r/Nov2018bumpers, r/NICUparents, #deadbabymoms, #rebeltrachmoms, thank you.”
This story was submitted to Love What Matters by Jessica Wolff of Illinois. You can follow Lily’s journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read Jessica’s powerful story of her surviving daughter:
‘I chose to wear headphones. I didn’t want to hear or see Lily, afraid she would die. I kept my eyes affixed on my husband.’: Parents who lost twin daughter navigate marriage through tragedy, ‘We weren’t remotely prepared for what lay ahead’
‘You must be so relieved. I bet you can’t wait to take her to Target.’ This medical hell would follow us home for years to come.’: Mother shares reality of daughter’s tracheostomy post NICU, ‘If I was going to do this, I’d become the best damn trach parent ever’
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