by Amelia Gordon
I suspect that few parents can turn the experience of parenting a child with special needs into poetry but Maria Mutch has managed it. Maria Mutch, a Canadian born writer, living with her husband and two sons in Rhode Island, explores in this book the loneliness, the agony and the deep well of love in caring for her Down syndrome son Gabriel. That he is a Down syndrome baby is evident from the start, but he begins to speak only to lose that power at age 6 with his final words “All done”. After that he retreats into himself, communicating with his family by sounds, but not speech. He is finally diagnosed with autism among a host of other problems.
At age 9, Gabriel begins to shriek in the night for long periods of time, and bang doors. As a result, Ms. Mutch must stay up most nights with him why still living an exhausted daytime life. His care is all consuming, but he does have luck in that therapists are available and his family stays together and cares for him.
The one language he appears to speak and understand fluently is the language of classical jazz. He is, as his mother says “in the music” and their great entertainment is to take him to jazz clubs where he sways rhythmically.
In the loneliness of the long nights caring for Gabriel, Ms. Mutch turns to the south pole explorer, Richard Byrd’s autobiography “Alone”. In 1934, Byrd stayed alone in a hut on the Barrier in Antarctica, more than 100 kilometers from his base camp and fellow explorers. His perceptions and his physical and mental disintegration during his four month sojourn fascinate the author and she by turns sees his isolation and Antarctica as metaphors for both her situation and for Gabriel’s internal life. She also explores a university copy of Camus’ Myth of Sisyphus. Sisyphus was the Corinthian king who was condemned to push the same rock up a hill again and again for eternity, as punishment for stealing the secrets of the gods. There is a lesson to be learned, as she puzzles over Camus’ perception that Sisyphus is happy. In the end, she realizes that this mystery lies in the acceptance of fate. At one point, when asked by her therapist what she thinks when her child begins to shriek uncontrollably, she says simply “submit”, and in the end she finds the key to peace in the words “stop struggling”.
This is a lyrical book and a tale of endurance, exhaustion and love. It allows those not raising these children, some insight into the loneliness and pain, love and joy that is part of daily life in these families.
Know the Night is published by Alfred A. Knopf Canada