A Home Funeral for Baby Burton
By Kateyanne Unullisi
Today is the one year anniversary of Burton’s death. Burton’s family and friends remember him keenly every day, especially as these darkening autumn days of winds and falling leaves bring back the season of his dying. And the geese gathering and calling in the sky just now, as I write this, are the song of his leaving.
I remember standing at the front door of his little green house on the top of a hill in Seattle, overlooking lake and trees. I shook because I hadn’t met him or his parents, and because I was about to hold a very ill baby who didn’t have long to live. I was about to enter the space where I would hold both sides of things: the liminal house of love and loss, and the glaring world of timetables and paperwork. My little dog Luna waited in the back window of my car, and I would be glad to hold her when I returned a few hours later.
Burton lay heavy, limp and warm in my arms. His breathing rattled and tore in damaged lungs. His blue eyes flickered and rolled and he had a dozen little seizures in the few hours I was there. Toby, his black dog, stayed by him, watchful.
Alicia and Derek were calm, sad, and smart, and right then, meeting them, I want to run to the other side of the world and never look back. And there was so much sadness and grace in them, that really, how could I make any choice but to stay and listen, and learn?
The beautiful carved table we sat around was covered in medicines and charts. We made a space to light a little candle, to acknowledge that we were here to talk about ceremony for removing life support and ceremony for after his death. We apologized to Burton for the things we had to say in front of him.
His parents were exhausted, physically curled inward as month after month they absorbed assault after assault to their guts and their hearts. I held the baby, listening as they tossed the story back and forth, the story of diminishing hope and expanding love.
There had been a precious few months together, where with the help of Stepping Stones, a palliative care and hospice program for children, they were able to bring Burton home.
They could show him the life they loved, of camping in the Pacific Northwest and exploring the lakes and parks in their Seattle neighborhood. Burton even got to be the ring-bearer at the wedding of his aunties. They spent a sweet, sunny summer together, aware every moment that Burton would not get better, ever.
Now, when summer – and their hope – was gone, they sensed that there was something that could be done to sanctify Burton’s journey. “I just have a feeling,” Alicia said, “that somehow this can become beautiful.”
I asked them to tell me all the times along the way ahead that felt significant. Removing life support. The wait. His death. The celebration of life a week later. I suggested a few more: getting themselves ready and solid for their own journey. Preparing their close and expanded circle of friends and community. I was envisioning a map for their journey over the next weeks, one that would be filled in with way-stations and guide-posts made from ceremony and ritual, the rituals created from yet-to-be discovered meaning I would listen for, that would come from their own souls. We called it a Transition Journey.
“But there is a part that I don’t hear,” I said. “When he dies. Then what happens?”
Alicia curled into herself even tighter. “It’s the part I can’t stand thinking about. The part when I hand him over.”
“But you don’t have to hand him over, Alicia. You can keep him here, at home after he dies. You can take care of him yourself and if you want, you can be the last one to hold him and even put his body in the crematory and push the button yourselves.”
They looked at me in horror. I thought maybe they would gracefully see me to the door right then.
Alicia was not OK with it. “No! It’s not legal and also I don’t want to see him dead.”
Derek rocked Burton in the rocking chair, swaddled, against his chest.
OK, then. I asked them what plan A was for ‘when he dies.’ When he dies they call the social worker who calls the funeral home and within moments a shadowy person comes to the door and the body is handed off, as quickly as possible, probably by Derek. Alicia is under a thousand blankets in the bed at the other end of the house.
I asked if they were willing to consider a Plan B? Another way that could – I felt – bring real beauty and healing into the terribleness of everything. And they said yes.
So I described how Burton would look after he died – beautiful, and dead. He would not explode or smell or be in any way frightening – all the things people who haven’t been with the dead naturally fear.
Since there would have already been a ceremony, a witnessing, of the moment they chose to remove life support and await his death, the shock of his actual death would be softened. That decision and ceremony would be the time when they began to release him, to stop fighting for his life, and against his death. So when he did die, it would not be an emergency. (Death is never an emergency. He’s dead call someone do something remove us from the dead body! Treating death as an emergency is a way of bolting from agonizing pain, when allowing it instead – moving into the space – makes room for truth, and healing.)
It could be, in Plan B, a quiet, sacred, time out of time. Together, candles, soft light, sanctified space that was prepared to care for his body, to hold him and grieve in their own home, with all the time and quiet, privacy and care, they needed. It was legal, and I could help them.
And they said yes.
So we planned a home funeral for Burton. I sent them videos and support from the National Home Funeral Alliance (and reached out to NHFA for my own support). Alicia and Derek were so brave – looking each fear straight on and asking for help and advice. Alicia worried about what her community would think if they kept Burton home and cared for him after he died. Their young, vibrant group of friends had, like most Americans, not faced death much. I doubt any had ever heard of a family-directed home funeral or even seen a dead body. Certainly not a natural, unembalmed body. She worried but it did not stop her.
And so Alicia and Derek and Burton became teachers, modeling to their friends and families a more human, natural way of death. It was in the last days of October, when the rains begin, when the leaves fall, that the transition journey began. Derek and Alicia took responsibility of being Burton’s parents, mindful and present, through the long days of his dying, Toby dog by their side, along with grandparents and aunties. And finally, a year ago today, they sat in the quiet little house, candles and soft lights, singing together around the carved table. Late in the afternoon, as they sang ‘Leaving on a Jet Plane,’ Burton died.
Toby whined. Alicia asked for the hundredth time if he was breathing. And Derek, holding his baby, checked for the hundredth time and this time, he said, “No.”
Here’s what they told me: then, just then, they heard a strange sound overhead. Someone went to look, and the sky was filled with geese, the biggest flock they had ever seen, honking, baying, barking, a mighty noise.
There was no emergency, and no more pain for Burton.
And for his parents and grandparents, aunties and friends, there was all the time and quiet and love inside the little green house on the hill to reckon with his death, with their sorrow, to hold him and rock him, and say goodbye.
A Prayer at Burton’s Death
Divine Presence. You have known us and loved us from the first moment of our lives.
Now you are with us here at Burton’s death.
Thank you for always being with us.
Please take and receive our baby into your presence and care for him, guide him to his Ancestors who wait to care for him. He is precious to us. Give us strength and comfort as we let go of Burton and he moves now into your hands. In faith and in love, we commit him to your care.