18 months ago I walked into a hotel in Orlando wondering if it would make a difference. It was the night before the 5th Lennox Gastaut Syndrome Foundation International Conference was starting and I had been invited to meet some of the other attendees ahead of the event.
I usually shy away from meeting perfect strangers and feel a lot of anxiety around attending new things. This evening was no different. I had no idea that these strangers would actually be perfect. A text told me the room number to the small suite. As I hesitantly approached the room, muffled happy laughter intrigued me through the door. A smiling couple walked up just as I knocked, “Oh you can just go in! Are you here for the LGS conference? We are too, welcome! We will introduce you to everyone.” Within a few moments I realized that I had found my people.
In the 38 years since Nick was born, I had never met another child with the same physical struggles that Nick had. I had never met another mom who had lived my same experiences. I had felt so isolated.
Crowded in that suite living room were mothers and fathers, babies, teenagers and adults. Other kids who looked like Nick, sounded like Nick, drooled like Nick. I could barely take it all in. I was embraced physically and emotionally. That weekend conference was incredible.
Arden had his own wonderful bonding experiences too. One of the sessions that was held over the weekend was the Fathers session. Only Dad’s allowed. Well Nick went too because he didn’t want to go to the daycare. The schedule called for the meeting to be an hour. The mom’s session was great and when we finished, a group of us waited outside the door of the conference room our husbands were in. We waited and we waited. Finally after almost an hour had passed, this group of men, now brothers, emerged from their ‘man cave.’ I tried to find out what had happened in there. What took so long. Arden just smiled and said, “we are sworn to secrecy.” I couldn’t get any more information out of him other than they ‘had talked.’
Over the years I had gathered people around me, family members and friends who were supportive and who loved me. That had been helpful. However nothing compares to the feeling and connection I have with others who have walked the same path I am walking.
So if you feel isolated, and alone, I implore you to find your tribe. Seek out others that have or are handling what you are dealing with. It will probably feel uncomfortable for a brief moment, but I learned that the awkwardness quickly dissipates and that shared experiences bond human souls together in a deep and profound way.
This weekend we are attending the 6th LGS Conference. This time it is here in Seattle. My tribe is gathering.
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