When I found out that my son was born with a disability, I felt isolated and alone. As his mother, I landed in this category of different. As much as I embraced my child and his disabilities, I was the mom who spent hours a week with Early Intervention and had a bookshelf dedicated to my child’s needs. In those early days I felt a bit lost, alone on my parenting path. But along the way something remarkable has happened.
Then we hosted a parent coffee for other parents of kids with Down syndrome when Alex was an infant and only one couple showed up. Their son was just a smidge younger than Alex, and we spent the evening exchanging stories. For the first time Mike and I shared some of our insecurities about our new roles as parents of a child with a disability, and so did they. And suddenly this different path felt less lonely and strange. We had company, there was strength in the companionship there was something magical about finding this couple. We didn’t know it then, but they was the first of many people who would cross our paths on this complex parenting adventure.
When I talk with most women, they try to understand, they ask questions, listen carefully and are sincere in their efforts to grasp what our lives are like. It’s necessary to have these exchanges so that others may know at least in a general way, what this different path looks like. But my role is that of an interpreter, always translating, life on this path that they will never actually experience and only ever see the tip of the iceberg, having no idea of the enormity of what lies beneath the surface, I often feel as if I leave them more puzzled than enlightened.
Then, when I connect with another complex mama, everything fits. Instead of meager attempts to show them a snapshot of our lives, they’re finishing my sentences and nodding along. I don’t need to translate because she’s fluent in my language. Without even trying, she recognizes the vast enormity of the iceberg, because she has one (or more) of her own. It’s effortless, it’s as comfortable as as my favorite pj’s. Sometimes I bring out the deepest, darkest wildest stories, the ones even close family members never hear, just because I can. The catharsis is epic, because when you find those moms, they can match the stories without even blinking.
There’s nothing like it.
I’m a validation junky. If it could be manufactured into drug form I’d need unlimited refills to ensure I’d never be without. Getting that connection, that understanding is a necessary as air and water
I’m weary of the overuse of the word “tribe”, I’m not one for clichés or cultural appropriation, so I avoid the term, but I’m not sure there’s an adequate synonym. Mom’s of tricky kids are my tribe, my clan, my people. I could not make it through this adventure without them. No matter what happens, no matter how odd I feel, whether I’m overwhelmed or overjoyed, I can count on those few people to just get it, to cry or cheer along with us, to share our joys and sorrows in true community.
Dear moms of tricky kids, with every fiber of my being I am grateful to you. For your unconditional acceptance and unity. You are the sisters of my heart and I couldn’t do this life without you.
*Disclaimer: While this is written by a woman to women, by no means do I exclude the fathers. The men on this road are just as valiant and worthy as the women, but by nature of being a mother, I do relate and connect mostly to other moms.*