Yesterday I flew halfway across the country to attend a birthday party for a woman I’d never met.
This is the story of why, and of how 99 women I’d never seen in real life have been my salvation.
Many parents of children with rare diseases find refuge in disease-specific online communities. I’m in one of those, and it’s been a fantastic resource, for all the reasons detailed here. I seek out help when I need it, and I try to give back when I can. The people I’ve met there understand our journey better than anyone else possibly could, right down to the smallest details of our daily lives, and I have learned a tremendous amount from that community.
But – these communities can also come with some of the downsides detailed here. I am incredibly grateful for the support I’ve received and I’m not about to leave the group, but for me, in our earliest days and months with L, immersion in it could become overwhelming. While it’s filled with support and encouragement and empathy and problem-solving, a veritable hive mind of people who get it, it’s also by design a place where people turn when they are going through hell. It fills my Facebook feed with all the things that could go wrong, and plants seeds of worry about complications I would never have heard of otherwise. And so I went there with caution at first. If I had spent too much time there while we were just beginning to wrap our heads around what was happening, all of the worst outcomes and what-ifs for L that were already trying to shove their way into my head all at once would have lived too near the surface. I needed to dip my toes in gradually, and so that group didn’t become my main lifeline in the way it can be for some parents.
My online refuge is a group linked only by the common thread that we all happened to be pregnant at the same time. That group, made up of women from all walks of life and stretching around the globe – they have saved me, a million times over.
Nearly four years later, across multiple platforms and through discord and mayhem that occasionally threatened to dissolve us, 100 of us are still going strong. I talk to ninety-nine amazing women every single day. When L was born they were my safe space, where I could rant and rage and curse and cry – anonymously at first, and at first that safety came from the anonymity, in a space where I didn’t have to fabricate a happy ending or edit out an F-bomb in case my mom was reading (hi Carol!). But over time it evolved into enduring friendships with very real women across the country. They understand the hopes and fears and struggles that come with L’s diagnosis – not because they’ve experienced it in their own lives, but because they’ve been by my side every step of the way. They have been there with me in every hospital room, and at every appointment. They have rejoiced with me, and they have cried with me. They joined together to mail me a box of sunshine during some of our darkest days. When I felt like I was drowning, they were my life raft.
If I need an ear or a shoulder to cry on in the middle of the night, someone somewhere is awake. If I need a laugh, they do not disappoint. If I need to vent about my toddler toddlering, they really, really get it. There are a handful of other significant medical and developmental diagnoses in the group, and a myriad of ways in which facets of all of our experiences interweave and align beautifully.
More than anything, they have proven to me time and again that I am not alone. Through months and years in which I spent a great deal of time feeling like no one who didn’t have a short gut child could possibly understand what we were going through, my 99 have shown me that every single person in the world struggles; that every mother fears for her children, every mother hopes for the future, and every mother feels varying degrees of crazy sometimes. They have helped me learn that parenting is always hard, and always also filled with joy; and that if we set aside some of the details that make our paths different, the feelings and emotions at the heart of it all are the same – and because of that, no matter how different my path looks from theirs, I don’t have to walk it alone.
So when I flew 825 miles to spend a weekend with 30 women who may or may not recognize my face, it wasn’t absurdity – it was a homecoming. That birthday party was a family reunion.
I may be on a parenting journey that none of them have traveled, but they have proven to me that others can walk by my side, if I only let them. It’s not so very different from theirs, after all. And no matter what comes next, I know I am facing it 99-strong.
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