I spent last weekend in San Francisco with my internet friends. Honestly, that is a sentence I never imagined myself writing. What kind of mom packs up her daughter and heads across the country to meet up with people she talks to online? That just sounds crazy!
In California, I met up with a group of women that I depend on in many of my darkest moments but had never seen in real life. They are the mothers of girls with PCDH19 Epilepsy, like my own daughter, and our Facebook group has been my lifeline for the past few years. We planned to meet for the PCDH19 conference that brought together families, researchers and clinicians from around the world. I spent months switching between excitement and terror as I prepared to meet them. What if they were weird? What if they realized how weird I am? What if the amazing connection in the group turned into awkwardness in real life?
Over the weekend, we broke bread with the families in town for the conference. That Friday evening, Alyssa and I met two other families in Union Square. The moment that our daughters met, there was an instant connection. Somehow they knew that they were sisters and we knew it to. We spoke for hours and all of my fears melted away.
I spent the next day live blogging the PCDH19 conference and trying to soak in as much new information as possible. There was a reception afterwards and I had a chance to speak with several of the top researchers on the planet about Alyssa’s condition. It was amazing to get answers from the experts about issues we have been struggling with. The best part of the day came that evening though when the families headed back to the hotel for dinner and drinks.
As we sat around the fire pit in the hotel courtyard and talked for hours, I suddenly felt my soul exhale. Every woman in that circle knew what it was like to hold your seizing daughter in your arms and pray she takes another breath. Every woman understood that strange mixture of devastation and relief that comes with a diagnosis. Every woman bears the scars of dreams that were ripped from her chest. Each of them understood the pressure of carrying this burden but somehow as we all shared our stories and shared the weight, it seemed to get a little lighter.
I am at the point in this journey where life is no longer a constant crisis but it is often still tiresome and lonely. Parenting a child with special needs can be incredibly isolating. In that moment though, I wasn’t alone. I had found my tribe.
We shared our struggles and our triumphs. We laughed with each other and we shared a sacred silence as we heard each other’s stories of seizures and learning the diagnosis. Each of us had different styles of parenting, advocacy, and even living but none of that mattered because this bond we shared was bigger than that. We talked about that instant sense of community and how the conference was as much about feeding our souls as it was about learning the newest PCDH19 breakthroughs.
As parents we often talk about the need care for ourselves if we are going to continue caring for our children but putting that into practice is often difficult. We quote the old cliché about how difficult it is to pour from an empty cup but sometimes we don’t realize just how empty we are. The needs are so great and the demands so intense that sometimes we can’t stop long enough to notice our own exhaustion. There is something special about being surrounded by other families in that same position. I didn’t feel obligated to pretend like I knew what I was doing or that I’m not still overwhelmed sometimes by this diagnosis. I could just breathe deep and share my truth because I had found my tribe.
Note: While I connected more with the moms, some dads did attend the conference and they are valuable members of the tribe. My husband stayed home this time and took our boys camping. We are excited about attending the next conference together if budget allows.
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