Durga Tool #6: Synchronicity, Luck or Fate (whatever it is, I’ll take it!)

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

Well, it’s official. The blood test results are in and my son does indeed have a new gentic diagnosis as I wrote about suspecting a couple of months back. It feels weird. I’m not going to go into the details of which arm of which chromosome has been duplicated or deleted here because what interests me more is the universality of the experience of parenting a child with special needs, not the symptoms or their specifics. More unites it than divides it.

What I’ve been reflecting on instead is the event that made this diagnosis possible: the mother of boy who also has this incredibly rare syndrome happened to be sitting in the same waiting room of the same office at the same moment as me and my son. Despite years of being examined, poked and prodded by experts, it took another mom just a moment to look at my son and see some spark of recognition that led us to the truth. A different doctor, a different day, a different area in the waiting room, and we would have spent who knows how many more years in the dark. Do you have chills? I do.

Some people would call it Fate or maybe even Divine Intervention. Out of all the appointments of all the neuropsychologists in all the suburbs of the world, that we should meet is such a statistical improbability that only a divine hand can have played a part. “Things happen for a reason” is a common mantra of special needs parents and I suspect a lot of folks would say that to us in this instance as well.

Others might call it Coincidence and chalk the shivers that are still running up and down my spine to apophenia, or the human propensity to see connections between two unrelated events. I mean, it’s not really that odd that we’d be seeing the same doctor (there aren’t that many of them, probably) and the appointments involve multiple long visits. The chances that we would meet seem small but aren’t impossible.

Still others who fall in between the two extremes of the religious-skeptic spectrum might give credit to Synchronicity, or meaningful coincidence. They might even go so far as to say I attracted this mom to using Synchronicity; just weeks before, I had become very clear about wanting a rock-solid diagnosis for my son, re-arranging my life to focus on his needs, and trusting that the answers would come.

Who knows? Who cares? Whether it’s because of some divine conductor or damn good luck, I’ll take it. While it would be nice to have a definitive answer about the big questions of life, I’ll settle for the little truths. Certain ambiguities — like whether there’s a force out there looking out for me — I can handle. Others — like having a proper and accurate diagnosis — not so much.

P.S. I love a good Coincidence/Fate/Synchronicity story. Share one if you have it!

Advertisements

Plate techtonics

I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.