I hear parents of other handicapped kids saying all the time, 'I wouldn't change my child,' " Johanna said one night. We were lying in bed, talking as we fell asleep. "They say, 'I wouldn't trade him for anything.' But I would. I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school. I would trade him in an instant. I wouldn't trade him for my sake, for our sake. But I would trade for his sake. I think Walker has a very, very hard life.
This, from the book The Boy in the Moon by Ian Brown, Canadian author and journalist (Globe and Mail). Brown's book is about his perspective on loving and caring for his son Walker, born with cardio-facio-cutaneous syndrome.
Need a summer read? Read that book.
This past Saturday, Ralph and I attended the play based on the book, performed at the Crow's Theatre. Including the irritating pre-performance of us sitting in traffic and the dramatic post-performance of us fighting about this-and-that, the outing was a real-to-life experience. At times, it felt as if the actors portraying Ian Brown's family were actually in our livingroom, replaying parts of our story. Held on a stage with minimal props and beautifully orchestrated light and sound, the play included excerpts from the book, and, at appropriate moments, photos of Walker were transposed on the back wall.
There's so much in Brown's writings that resonates with my own experience. It was the first book I read about loving and caring for a child with special needs that felt real. It was freeing to know there was another parent who struggles to find meaning and hope - and swears in the middle of the night when they are wrestling with an active kid and a feeding tube. In particular, I loved reading about his conversations with Jean Vanier.
The more we meet the handicapped on their own ground, rather than our own, Mr. Vanier says, the more we evolve. We begin in fear of their appearance and behaviour; move on through pity; pass through the stage where we help them and respect them, but still see them as lesser beings; until finally we experience "wonderment and thanksgiving," and "discover that, by becoming close to disabled people and entering an authentic relationship with them, they transform us. They help us to move from the personal desire for success and power to a desire to be with those who are weak and help them to be just as they are, knowing that we receive as much or even more than we give."
The most beautiful sound during the play? The sniffling soft sobs of the audience.
When I heard the runny noses being blown and glanced around to see tears being wiped off the faces, I wanted to sing out something like Hallelujah. As crazy as that might seem, my hard heart was cheered.
There are so many stories still waiting to be told. When their power is harnessed, my hope is that we see a movement of radical compassion - not based on pity or on tears of sympathy, not based on what is familiar or comfortable, but on a desire to see and know a stronger diverse community with all parts flourishing.
(quotes taken from The Boy in the Moon)
Need another story - with pictures? Peek at this trailer: