One of reasons I am motivated to write about my daughters and their disability is the desire to give colour and depth to what otherwise seems like a charcoal sketch of their reality.
Now that there is more sunshine streaming through our windows lasting into the late afternoon, Janneke is determined to take her walker wherever she can find the sunbeams and face the light. I am amazed at how she can find the smallest ray of sunshine and lean into it. I may never know what goes on in her mind and how she perceives her surroundings, but it is clear that she craves light.
One of the reasons I am motivated to write about my daughters and their disability is the desire to give colour and depth to what otherwise seems like a charcoal sketch of their reality. Words such as medically fragile, complex care, technologically dependent and vulnerable are accurate, but they limit the understanding of Rachel and Janneke. If I allowed only these words to sit as descriptors, I’d be denying the inexplicable and supernatural strength that seeps from their seemingly weak and fragile lives.
This month’s column is a story about another small but mighty one who craved the sunshine like our Janneke.
The power of the powerless
There’s a picture of a bright-eyed little boy that sits in my home office on the wall. Among the miscellaneous reminders and keepsakes, his face is one of the first things that catches my eye when I enter.
His name is Ryan Martz.
Above Ryan’s picture I have placed one of my favourite books, The Power of the Powerless. Author Christopher de Vinck writes of his experience with a severely disabled brother and how his brother Oliver’s story challenged the perspective of disability and the value of life for so many in 1988. “Oliver could not move his own hands, could not wink, whisper, stand. He did not have the power to hold a spoon, to write a letter, to embrace, yet he had the power to move the President of the United States, a former vice-presidential candidate, bishops, Jewish leaders, doctors, mechanics, lawyers, carpet salesmen, corporate secretaries.”
At a time when disability was still hidden from the mainstream and tucked into the shadows of our institutions, de Vinck’s simple and ordinary telling of Oliver pointed to the alchemy in sorrow and the potential for hope and compassion born out of grief and suffering.
Ryan was born with a rare congenital disorder known as Agenesis of the Corpus Callosum, a rare birth defect with brain development during pregnancy. I only met Ryan once, when he was an infant. I never had a conversation with him or listened to him laugh, but I have since learned his life has created hope for many children today.
In March 2016, after seven full years of life both at home and in hospital, he died suddenly and unexpectedly, leaving his dad Cliff, his mom Arlene, and big brother Devon to figure out life without Ryan’s infectious laughter and mischievous grin – or his insatiable desire for sunshine.
To move and to motivate
Prompted by the life and love of Ryan, and a desire for hope, Cliff, Arlene and Devon, alongside family and friends, have created an organization called Ryan’s Rays that partners with Christian Horizons Global in supporting inclusive education in Ethiopia. Ryan’s life prompted generous hearts to offer $50,000 last year for accessible classroom and school development, as well as equipment needs. In October 2017, the family traveled to Ethiopia to witness firsthand the power of Ryan’s story.
In a few weeks, on May 31, 2018, everyone is invited to gather again to celebrate Ryan’s life and legacy in Hamilton, Ontario. There will be tears acknowledging the absence of Ryan, but there will also be joy in hearing the stories from Ethiopia, where children can escape the cultural shame of disability and be given the chance to thrive.
“The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned” (Is. 9:2).
This month’s column is also an invitation. You are invited to participate in Ryan’s story. You can find more information at ryansrays.org.