In 2005, our son Nicholas was admitted to the palliative care team at our local Children’s Hospital. Nick’s severe cerebral palsy was complicated by uncontrolled pain, epilepsy and respiratory complications. Everyone in our family, especially Nick, was desperate for comfort, rest and end to the nightmare of constant suffering.
As our son’s mother and his principal caregiver, I never stopped advocating for treatment solutions to alleviate Nick’s pain. That said, my husband and I promised that there would be no more surgery or painful interventions – we sought comfort measures and ways to enable a rich life, though restricted, for everyone in our family.
The backdrop to our home drama was the Latimer case. In my book, The Four Walls of My Freedom, I wrote “Back in January 2001, I had written a letter to the editor of the Ottawa newspaper supporting the Supreme Court of Canada’s ruling on Robert Latimer’s sentence. I believe that the public would have reacted very differently if Tracy Latimer had been able-bodied, or if she had been suffering from the effects of cancer, for example. It seemed evident to me that because many people were repulsed by the awfulness of giving total care to someone as disabled as Tracy, they assuaged their guilt by supporting Robert Latimer — exalting him, even. People who supported Robert Latimer were so afraid of dependency that they were pleased to erase the evidence of it.”
Tracy Latimer’s disabilities were similar to those of our Nicholas in many ways and in 2005, her case still pervaded the public imagination. For us the possibility of tasking medical professionals to manage our son’s pain and offer our family ways and means to live a good life was a challenge. Nicholas was almost ‘written off’ as not worth treating.