By Miriam Edelson
PROMPT — What is Love?
There is a very compelling photograph of my then four-year-old daughter tucking her older brother into bed. She is patting his head gently and singing a lullaby, one that I sang regularly to them both. We were at my son’s group home, a place where he received 24-hour care for his neurological condition.
He had sprouted into a beautiful boy with soulful blue eyes that erupted into smiles at the flicker of light in his face. He was unable to sit, stand or speak and received nourishment through a feeding tube to bypass his raspy breathing. And yet, with a voice that sounded like the cooing of a pigeon, he communicated his pleasure and discomfort.
His sister, born two years later, was bursting with health and an outgoing confidence. From the time she was an infant, she visited her brother or played with him at our home. There was a strong resemblance between the two of them, and a sense of belonging as sister and brother became evident as I dressed them, for example, in matching PJ’s. We didn’t hide from her that he was expected to die young, something she understood in deepening ways as she matured.
During these early years of their lives, I felt compelled to help weave a tender and durable relationship between them. In effect, I suppose I wanted my daughter to love and also remember her brother, no matter what happened. One of the ways I accomplished this was to encourage their communication, even during times they were apart.
I noticed that a large, cuddly Pooh Bear inhabited my son’s room at his care facility. I searched out and purchased a second large Pooh Bear, this one for my daughter’s bedroom. I told her that she could send a message to her brother by speaking into Pooh’s ear. The Pooh in her brother’s room would hear the message and pass it on to him. This seemed to work very well for some time, the sense of magic still alive for young kids.
One of our favorite activities at the group home was to play on the swing stationed in the back. It was a large, flat apparatus on which I could situate my son’s wheelchair safely. We would rock and sway gently with the swing’s motion. Sometimes we would jump around and my son seemed to be dancing along with us. His spindly legs would jut ou— not necessarily on purpose—and sometimes he smiled widely. My daughter enjoyed this game in the fresh air too. And they each, according to their abilities, appreciated the other’s presence.
We celebrated their birthdays at the group home. Before we set out for a visit, my daughter would help me find an appropriate birthday gift. Something squishy that he could feel with his hands or some fabric of different textures we could stroke across his legs. Face-painting was an especially loved activity. My daughter would draw designs on her brother’s face and we would take photographs of them together.
I believe now that my desire to create a feeling of family between them succeeded. Even now, nineteen years after my son’s death, my daughter has told me she often feels his presence close by. She misses not having a brother with whom she could share secrets, or roll their eyes at one another when their parents say dumb things. But there is an underlying feeling of love, woven carefully over the time they had together. And that’s a gift worth savoring.
Miriam Edelson is a neurodivergent writer, settler and mother living in Toronto, Canada. Her literary non-fiction, personal essays and commentaries have appeared in The Globe and Mail, Toronto Star, various U.S., U.K., and Canadian literary journals, and on CBC Radio. Her first book, My Journey with Jake: A Memoir of Parenting and Disability was published in April 2000. Battle Cries: Justice for Kids with Special Needs appeared in late 2005. Miriam completed a doctorate in 2016 at University of Toronto focused upon Mental Health in the Workplace. The Swirl in my Burl, a collection of essays, was published in October 2022.