Our 14-year old daughter Rebecca died four months ago, on May 6th, 2020.
Her death was a slow trauma- the gradual unwrapping of a horrible gift we were forced to accept shortly after her birth, that we were left no choice but to keep revealing.
Her death was a violence in slow-motion, carried out over years and then months, and then days, and then minutes, and then a few seconds that still seem to be passing in the back of my mind, in a loop that I’m not sure will ever end. Her breaths came shallow and then shallower… and then impossibly shallower, and then stopped, on the floor of the bathroom that morning. Over years and then months and then weeks, she became less and less and less Rebecca. She stopped smiling. The liveliness and then the life drained out of her.
In those final months, Rebecca mostly existed to suffer–turned suddenly into an organic machine whose only purpose is to struggle to breathe. Her every breath served only to prolong her suffering. The present darkened, and the vaguely approaching end of her life began to take on hues of brightness–more dawn than darkness. “It seems like it might be over soon” was uttered between us with a tint of hopefulness at first, and then for far too long it was our hopeful refrain. We hoped for her death. At times, we longed for it. She suffered more than she had to, but unfairness was a co-protagonist in the story of Rebecca’s life, starring alongside this fucking impossible resilience and spirit that should leave us all feeling weak and ashamed as we cower and abandon values in the face of such lesser struggles.
The aftermath of Rebecca’s death felt like a sigh of relief punctuated by regular little heart attacks- pangs of guilt and loss and longing. The absence of our little girl rushes in regularly, suddenly, violently filling space in my head, in my heart, in the room where I’m sitting. Then I remember how she suffered, and the wave recedes, leaving behind just a jagged residue and rawness.
We will never be whole again. But this wound, this absence–in the shape of a girl who never spoke but somehow taught us so much–is now filled with such incredible memories.
Perhaps I’m passionate about facilitated discovery and design because I know how bad humans are at seeing the world through each-other’s eyes. Some expressed hope that our daughter would recover, which to us just meant prolonging her suffering. We fired a hospice team because they were seemingly obsessed with providing counseling services that we didn’t want, but obstructed our suffering daughter getting pain relief.
Try and close your eyes once in a while. Try and see the world through the eyes of someone whose present is filled with darkness, even though you can see the sun. Yours is not the only reality, and some realities are simply not shared.