I was staring at the screen looking at 14 other mothers. Women who have at least one child with the same PTEN mutation my girl and I have.
A quick scan of the “room” on this Zoom call showed me newly diagnosed, seasoned veterans, moms of teenagers, and moms of toddlers. There were some mother/child combinations, and some with “de novo” or spontaneous mutations. We lived mostly in the US, although one joined us from Australia. Even as I watched my screen and jumped in to the conversation where I could, my mind was racing.
I “know” at least a few dozen more PTEN moms, and yet, Facebook algorithms being what they are, the call notification didn’t circulate as widely as it could have.
A few of these moms “know” us from this blog. That was flattering and mind-blowing simultaneously.
It was like a “first date” with old friends-ones who I’m not likely to meet in person any time soon.
Listening to each one talk I wanted to spend hours with them. I wanted to hear their stories in intricate detail. I wanted to know about overlaps and differences.
Each story made me feel like I could fill out a giant Venn Diagram.
As moms I am sure some of us are alike, and some different. In some cases if we lived nearby we might be the best of friends, and in others mere acquaintances.
Yet I felt an instant bond with every single one, and as I am notoriously terrible with names I admit even writing a note or two next to some names to help me remember their story.
We all had a common desire to be heard, and to hear. We wanted to be heard by our children’s doctors, which with only 2 notable exceptions as locations seems to be a coast to coast failure. And we wanted to hear other stories. We wanted to feel less alone. We wanted to know what happened with other people’s children.
I think on this call my girl was the oldest at 16.5 years, but there were others who had been diagnosed longer, as she was already 8 when our diagnosis came in 2011.
I had plans to attend the PTEN Foundation Symposium in Boston in May. My plane tickets were refunded this week. I had hesitated canceling even though I knew for weeks in my heart it was not to be. I hesitated because I was just so excited to meet some more moms like me. Moms who have spent their child’s entire life being detective, advocate, voice, cheerleader, motivator, educator, and have earned their own type of medical degree from decoding research they once thought was impossible to understand.
I know there will be other gatherings, and I am grateful to the PTEN Foundation for that. But, the need to connect runs deep.
I wonder why I feel so compelled now to meet others. I have been doing this quite a few years with only a small handful of PTEN moms. And truth be told I’ve been advocating for this kid’s medical mysteries since 2003!
I just saw this shirt pop up in my newsfeed. I’m well aware of how deeply ads are targeted to us personally. And it definitely is true. I am by nature more introverted, especially in large groups, finding it easier to write than speak.
Except lately I miss people. Not all people. Don’t worry I haven’t totally lost it yet. But, the kind ones. I miss the kind ones.
Something about a pandemic can help you reevaluate the importance of connection.
My family of three has spent so much more time together than we have in a decade. It has been a blessing in this difficult time to reconnect.
I have spoken to a few more old friends too. Previously we were too busy to text, and certainly too busy to call.
I have learned how easy it is to Zoom, and FaceTime. I know now the value of face to face contact – even through a screen.
I have to ask myself if in a different time I wouldn’t have made an excuse not to get on that call.
In my heart I know the answer.
And I’m grateful for the forced lesson in the value of connection.