My Zoom window opens and I see a small dark-haired boy. He is dressed in white and lying in a small white casket. I knew I was logging on to attend a child’s online funeral but the sight of a dead child is never not gut-wrenching. All of it is wrong. Specifically, watching this scene unfold in Chicago from the privacy of my home office on the West coast. It seems voyeuristic. I remind myself that his parents have invited us in to bear witness to this moment, and I am honoring them in doing so.
The pastor talks about happiness. Of course, we all want it. The Constitution says we can pursue it (though with zero guarantee). The will of God, he says, is not for us to be happy, but to be grateful in every season. This is a moment that’s not happy, but we can be grateful for this child’s four years, and in his loss we can and will mourn him, he tells us in a consoling tone. It seems that even a man of faith is consoling himself, struggling to accept the nature of this loss.
Four more years! Four more years! This second term presidential campaign chant runs through my mind. Give this child and his parents four more years, I think to myself.
His parents ascend to the podium. His mother tells us how her son was a child without language, but that didn’t stop him from communicating with love. She reminds everyone of his favorite things; his superpowers of being strong, smart, and courageous; and more of his accomplishments during his short time on Earth.
Four more years! Dear God, I wish you would have given this child a chance to run and play, to speak, to tell his parents he loves them. Let him jump in mud puddles and catch frogs. Let him laugh as ice cream runs down his chin and onto his sticky fingers. Let him be the carefree child his parents envisioned when they learned he would make his way into this world.
My husband comes home unexpectedly in the middle of the service to drop off a coffee and croissant from our favorite French café. A small kindness in a cruel world. I wasn’t hungry. I’d already eaten and had stopped for a coffee myself when I dropped our son off at school earlier that morning. Our healthy, living son.
It’s not my son I picture in a casket in my mind, in a macabre juxtaposition of reality. The casket isn’t this glossy white and gold-handled style. It’s pink, and my daughter is inside of it. She was three years old when Tay-Sachs, a similar terminal rare genetic neurodegenerative disease, took her from us. Four more years would have been an eternity. A gift of more than double her life. An alternate reality many take for granted, but one I can’t fathom. Who would she have been, what could we have done together, where would we be now, if we had four more years?
The pallbearers carry the body that was their son away and out of sight of the camera as family photographs play on a loop on the television in the receiving area of the funeral home. I recognize many as ones taken when I saw them at an event just a few weeks ago in Chicago. When this family was smiling, happy, and whole. When we sang happy birthday to him. When his mother accepted an award for her advocacy work. When there was still life he had yet to live.
Death is a delineation line for the survivors. This child’s parents, now forever living in the after, will be forced to speak of him in terms that denote only the past, or conjecture of a would have been future. The challenge is to find a way to meld the two into one existence, encompassing both into a new reality for the rest of their lives. In the future, will they watch the video footage of their child’s funeral, or tuck it away never to see the light of day again? Will this mother replay the thoughts in her mind as she watches herself crying in front of the casket? Will she destroy the tape to rid the world of its existence? Trick question: There is no tape. Those memories live in perpetuity in the cloud.
If they can’t have a paltry four more years with their son, then dear God, give them a sense of peace somehow. Because the death of a child is unfathomable. Their hearts will need a lifetime of gentle care. Give them comfort. Let that be how they honor his too-short life.
I am crying as I shut off my screen. Next to me sits a picture of this family’s now-dead boy, my coffee, and also my croissant, saturated with all the butter in the world. But who knows what the future holds. What if I don’t even have four more years’ worth of them in my future? I devour the entire thing, which in this moment, brings me a small piece of happiness.
Becky A. Benson lives in the Pacific Northwest and works for the National Tay-Sachs & Allied Diseases Association as the organization’s Family Support and Engagement Manager find her at beckyabenson.com.
