As I approach the first anniversary of my husband, Robert’s, passing, I have begun to catalog what I’ve learned in the last few years and what telling our story has meant to me and others. His passing threatened to swallow me whole, but I am still here.
I’m also beginning to sense that our story is coming to a close. The tremendous need that drove my writing over the last 17 months is beginning to dissipate. (Oh, to be sure, I have more to write. I have found my voice! But I don’t feel an overwhelming need to write about this.)
What a year it’s been
I find myself able to occupy my own skin again. The laughter that had eluded me for so long, is back. Playing the game Sorry! with Lincoln and Maddie the other day was such fun! Lincoln, at 4 years old, hasn’t yet achieved the cognitive milestones to understand the game that’s designed for ages 6+. We play with somewhat random rules and meandering game pieces. Lincoln loves it when his pieces kick one of ours back to start. “Sorry!!!”, he laughs uproariously, points his fingers in glee, and then returns all the players to start so he can recreate the joy, over and over again.
The sorrow of Robert’s passing no longer knocks me back for days at a time. Walking the well-worn path around the local high school, I notice the clematis in bloom on the fence around the tennis courts. Robert would have seen these too and marveled at their complex beauty.
Did the young strawberry trees bloom while he was alive, their little heart-shaped flowers floating in the breeze? What did he think about this place? These questions come to me unbidden. They bring tears to my eyes, but I am not undone by the questions anymore.
Yes, Robert is gone. This is a true, sad thing. Yet how delightful that I can commune with him on paths we trod together!
Learning with the pen
Writing about our dementia journey has been hard but cathartic. To understand something we have to face it, live it, feel it, and then abstract whatever kernel of truth we can find from the experience. This writing has been the mechanism whereby I have cobbled together the meaning of our long life together.
I’m grateful to have gone down this path. That may sound trite or insensitive. But I believe there are lessons we glean about what it means to be human that we can only understand “in situ.” There is no force waiting to illuminate our way forward. This is a learn-as-you-go gig. I’m thankful to have learned so much before arriving at my deathbed. It would have been such a waste to have the light dawn in my final moments. Kind of a “Great, now you tell me” anticlimax. I want to apply these lessons now.
Lessons abound
Our little grandson, Carson Robert, his grandfather’s namesake, was conceived 3 weeks before Robert passed. He has Robert’s nose and his birdlike bones. We are all so excited to see him bloom and grow. What a privilege to witness his unfolding!
Robert taught me how to love unconditionally and without shame. He taught me that our time here is brief. He helped me understand the urgency of this knowing. The only time guaranteed to us is right now. What will we do with these precious moments?
Big impacts from small gestures
I am surprised by how impactful this writing has been for our children. These stories have become prompts for sharing our experiences of grief. This narrative has helped us find organization in the chaos of our feelings.
I’ve decided to turn these stories into a book. Maddie and Jackson enjoy rereading the stories and would like to hold the evidence of our journey in their hands, to cherish the memory of their father even after my website comes down.
For my part, I want to preserve the memory of Robert. And I hope that by telling our story, others can find solace in the familiar as they navigate dementia with their mother, father, spouse, or sibling.
There is more to tell
As I begin to piece together a book, I’ll stumble upon things not yet said and add these bits and pieces as they come to me.
For example, how did I keep my mind alive when Robert lost his? When he no longer expressed curiosity about the world? When he could no longer reason through a simple problem?
My relationship with Will continues. How has our time together been made richer by the tragedy of Robert’s passing?
For the past 17 months, I have published a new installment of our journey (nearly) every week. As I turn inward to assembling these tales in book form, my stories likely won’t come with the same regularity. I hope you’ll stay with me. Your support and perspective have added so much to this journey.
I opened my secret self to the totality of this human experience, and found, much to my wonder and surprise, I am not alone. May you find the same.