Meeting a life of limitation with a new set of words.
This month, our Janneke turns 13. Thinking back to her birth, I am reminded of the strong feelings we had then. It was obvious her body would not have the same freedoms as her peers to explore talking, eating and walking. In those first few weeks, we knew that we’d have to redefine (again) life together as a family and how to best care for Janneke.
With all the recent conversations about freedom, it’s almost as if the word itself has become a cuss word – a new F-word to avoid in conversations with others. Our world is tired of living with covid-19. The combination of uncertainty, limitations and having to wait has made it difficult to make plans for the near future.
Shortly after Rachel, Janneke’s older sister and the first of our two disabled daughters, was born, I sat with a geneticist who tried to explain the different diagnoses the team was considering. So much of what Rachel wasn’t able to do already in her few first days of life was dictating the tests planned and care given. All of this was replicated when Janneke was born three years later. With both girls, I didn’t know what to do with that uncertainty, the obvious and impending limitations, and it was impossible to imagine planning beyond one day at a time.
The power of words
“Physicians have the power to change the trajectory of a family’s life with their words,” author Sue Robin says. “Use your words to express joy, not tragedy. Celebration, not pity.” We are thankful to have some amazing medical teams that have injected joy from their experience with other children; this has allowed me to think about what might be possible with mine.
In the last number of years, I’m honoured to be working alongside CanChild, a Hamilton, Ontario-based research centre focused on childhood disability, and Dr. Peter Rosenbaum with the work of the F-words endeavour. In 2011, inspired by years of research, Dr. Rosenbaum and his colleague Dr. Jan Gorter published a paper entitled “The ‘F-words’ in Childhood Disability: I swear this is how we should think!” Intending to support parents, caregivers, educators and youth impacted by disability, the F-words – functioning, family, fitness, fun, friends and future – help to create goals to influence quality of life for everyone involved. The CanChild team is recognized globally for its work, and the positive ripple effects for families, caregivers and youth has been tremendous. As I write, we are developing online modules to create even more accessibility with goal-setting while at home.
When I think of fitness as a goal for Rachel and Janneke, our dreams take into consideration that neither of them will be able to run a mile. Yet, with fitness as a goal, Janneke has led warm-ups with her peers in gym class. Rachel is currently attending a Grade 10 girls P.E. class, happily observing with her eyes and engaging with her wiggling feet while sitting in her wheelchair. And yes, the goals with friends and fun are met here too!
Faith is another great F-word that fits into our family. Though our girls cannot engage with us in words about faith, there is nothing preventing us from offering faith-filled care. Influenced by Christ’s example, our hope is to see them welcomed and cared for in a world that welcomes and cares for the marginalised and the vulnerable.