Late in June, Martin, a local social worker doing a survey on the needs of caregivers in the Outaouais region asked if he could interview me. He’d heard about our situation from a friend of a friend. This is how things work in our new village.
We decided to meet In Wakefield at Cafe Molo’s on a Wednesday morning. This might sound strange but I was excited about the interview. A chance to voice my observations as well as have a coffee with another adult. The day we were due to meet India was seizing every fifteen minutes so Mark stayed with her.
The thing about parenting a chronically ill child is that it’s isolating. My friend, Maria sums it up this way, “If a member of your family is sick, you’re all sick.”
More and more I find myself wrestling with feelings of sadness when I hear about the ordinary things India’s friend’s do. I want my girl to do those things as well. I want her to rise out of bed right now and go for a swim in a river with me.
When India was ten, I taught her how to take the city bus from Hintonburg to Westboro to gymnastic camp by herself. Some of my friends thought this was reckless parenting. But I think that this kind of organized risk-taking gives kids a sense of independence and gives them confidence. In turn, I believe when these kids grow into teenagers they are more prepared to take on the world. It’s strange to consider this now. Last week, India’s jerks were so violent that she couldn’t hold a spoon so I had to feed her. Sometimes, I imagine what her life would be like if she didn’t have seizures. Where would she be this summer?
I liked Martin immediately. There was an openness about him that made me very comfortable. We sat in a quiet area of the café and talked about the last election. I told him that I was happy Mr. Ignatieff had mentioned caregivers, but I was disappointed that he’d only mentioned those caring for the elderly. Martin said that many of the caregivers he’d interviewed had mentioned this as well. The questionnaire was well conceived. I found it an interesting exercise in evaluating how my values have evolved over the last four years. Often, when I gave an answer, Martin would say that many of his interviewees had given the same response.
Finally we reached the last question: “If there any way your role as a caregiver has improved your life?” “No,” I shouted, “No, no, no. There is nothing good about this role. I want my daughter to be healthy.”
My response was the truth. Of course, I’m appreciative of the people and aspects of my life that make my position easier. Many people have gone out of their way for us and I can’t ever thank them enough. Currently, there’s a trend in society that dictates that we’re supposed to be grateful for the trials we endure. When life punches you in the gut instead of punching back or screaming in pain, we’re expected to learn from it. I can’t abide that philosophy. This isn’t a popular a notion. But I can not conceive in all honesty how I could be grateful for my daughter’s pain. When they find a cure for epilepsy I promise I will be the queen of grateful.