As I followed her finger on the page, tracing down the story of her origin, her belonging in this family, I felt less in need of my coffee. We talked about our shared love of butterflies; our comparative freckles; whether or not she might find out where exactly in France this particular relative originated. In addition to her engaging smile, knowledge of genealogy, and receiving of me as a new guest at her table, Bridget has Down Syndrome. Somewhere on that family tree was a name of another family member with Down Syndrome.
“She was born in 1962,” she says of a cousin, who lives in an institution.
“Yes,” I said, “That was likely what was thought to be best.”
I then shared with her that my aunt was born in the sixties as well, and my grandparents had to go against all of the professional recommendations to make the decision to bring her home.
‘Why?” she asked quizzically.
“Because,” I said, “she had Down Syndrome, too.”
Her eyes lit up. “How old is she?”
“Well, she was in her late forties when she died.”
“She died?” she asked.
“Yes,” I said quietly. “Five years ago.”
She cocked her neck and said quietly, “I’m sorry,” her expression changing from a smile to a slight frown.
Before I could respond, “Mom! Mom!” She tapped her mom across the table, and quickly introduced me to Nancy, whom I later would learn is an inclusion advocate in the city of Chicago with her teammate, Bridget. Bridget excitedly told her mom about Debbie before it was time for us to leave breakfast and head to our morning devotions.
Our first speaker of the day was Rud Turnbull. I remembered hearing about Rud Turnbull before through stories Bill Gaventa had shared. I pulled out my notebook, and studiously prepared to take notes, pen in one hand, coffee in the other. Beside me, Bridget sat, legs crossed, head down to her family tree in her large butterfly notebook.
And then, Rud began to share. He said he was petrified. He said he had never written poetry, and surely not poetry he had shared, but that we were going to hear it. What came next, I was completely unprepared for and absolutely in need of, as it turns out.
Rud shared about his son Jay, who had various developmental disabilities. And then he shared about Jay’s death. Jay died after saying he wanted waffles for breakfast, his favorite breakfast meal. And after one assistant came in the door for the daily ritual of getting ready, his assistants discovered that Jay had collapsed. Rud shared, through tears, the experience of he and his wife, the phone calls they received, the quick and compassionate decisions they needed to make, the letting go of their son.
Somewhere in the midst of his story, the room fell into a holy silence of knowing and solidarity, and like many others, warm tears streamed down my cheeks. Each piece of his story stirred up images within me that I thought had long been buried.
A hand came firmly on my arm, and a soft voice came close to me. “Are you sad because you miss your aunt?” Bridget whispered so gently I had to turn to look at her to know if she were real. I met her eyes with mine, and nodded. She cocked her head and offered a smile so comforting, I smiled back, her hand still pressed gently but firmly on my arm in friendship. Here was this friend, met just minutes before over granola and yogurt, meeting my deepest grief for my aunt with the sweetest of smiles and the deepest of understanding. And she also had Down Syndrome.
I wrote directly in my notes: This is blessing.
Sometimes I get skeptical when people overuse the “blessing” language, even though it is fundamental to how I believe God is present in our lives. But in this moment, where someone articulated so closely details similar to my family’s experience, a gentle hand rested on my arm, not asking for anything, just resting, being, bearing with me, as tears quietly poured out an inward reality.
And there was no where else in that moment I needed to be. Blessed.
Later, when two more speakers had shared, and I felt like I had regained my control through coffee, napkins and cold water, I went up to Rud. I wanted to thank him for sharing in such a vulnerable way, and to tell him about my family’s hallway words, “let her go,” the lifelessness and the strange tubes and foreign change of death that he had touched so deeply- I wanted to thank him. I stood in line, and as every good conference goer, stuck out my hand to shake his. I began, “Thank you, Rud,” and as I looked up into his face, the deep loss of people we loved came in tears, and I could say no more, made silent by the moving river within.
Sharing of stories, sacred stories, is blessing.
May we move past our fears and share.
Kathy Dickson is a Field Associate for Anabaptist Disabilities Network. She first posted this article in November 2012.
Learn more about the work of Bridget and her mom at: butterfliesforchange.org.
Rud is well known in the field of special education and author of many books, includingThe Exceptional Life of Jay Turnbull: Disability and Dignity in America 1967-2009. Only months after this experience would I realize that he helped to author a special education textbook I used at Bluffton University, Exceptional Lives: Special Education in Today’s Schools. His wife, Ann, also a hero and author in the field of special education, co-founded the Beach Center at the University of Kansas.
