It feels like the morning after. The reality of maybe having gone too far. My last post from my Inside Out series, Luck Of The Draw was a big risk for me. Delving into the underbelly of my past in a public forum left me feeling precarious. But I always trust my intuition, my gut, and know that whatever compels me to bring these difficult things into the light is part of my journey right now. Perhaps what I have to share of my own experience will inspire someone else to take a deep dive into the depths of who they are too. It's just that first leap. Then there's nothing left but to paddle as hard as you can.
It's actually a wonderful time of life; kids grown, accomplishments accomplished, a life lived in so many dimensions, not much rattles me anymore. But what I haven't done yet is make sense of it all. What purpose has my life served and what is left to be done? Big questions. Questions I never had time (or the courage) to ask myself raising a family, having a career/making a living, sustaining relationships-- designing my life. And the big questions of why not me? Do I feel grateful or guilty? It's a lot to process.
Recently there emerged a diagnosis for the abnormalities of my 4 disabled siblings- Koolen de Vries Syndrome. It's caused by mutations in the KANSL1 gene in chromosome 17. The KANSL1 gene is involved in controlling the activity of other genes and in the development and function of many parts of the body (nih.gov). The mind-boggling array of symptoms in my siblings include brain abnormalities, unusual head shape, abnormal facial features, developmental delay/ intellectual disability, skeletal abnormalities like curvature of the spine, spondylolisthesis (vertebrae move out of position) sunken chest, as well as organ deviations like heart defects, stomach and kidney issues, skin and hair problems, crossed eyes (strabismus) etc. It's beyond sad.
So I await the inevitable conversation about my own genetic make-up and the repercussions for my children and their lives. I'm not sure what I could learn about myself at this point that would change the course of my life. My sole purpose really is to prevent the kind of heartache my family endured for my two sons.
It strikes me that, in a world where the emphasis is on self-determinism-- forging our own path, creating our own destiny-- there is actually so much beyond our control. It's really the way we respond to the circumstances we find ourselves in that allows us to steer our own course. And we are each faced with so many choices in our lives; in our jobs, in our relationships, in the business of life. We daily jump in feet first and follow the light to make our way to the surface. Then we do what it takes to stay afloat.
I am constantly amazed at the indomitability of the human spirit in this regard. That over and over again we are faced with obstacles and intersections that require each and every one of us to dig deeply and choose right or left, over or around, sink or swim. And that so many of us not only survive, but manage to thrive and live creative lives ever expanding the boundaries of who we are. It's heroic really.
Thanks for sharing in my process on this #sunday. I honor the stories of every one of you, each poignant and inspiring in their own ways, and take the opportunity to celebrate the miracles we are in our endeavors. In the week ahead, instead of focusing on where you'd like to be, "honor the parts of you that have gotten you this far". And as always, Mind Your Body.
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