An Invincible Heart

India, My Daughter

In front of the purple dinosaur
you kiss me, smack on the lips,
then gallop away. Abandoned
to dust bunnies, I follow scattered
crackers, wanting another kiss.

I find you in a place that has
seen cleaner days. We drink tea from
tiny clay cups. Then you find him,
soft fellow with the sea in his eyes.
You drag him with love, by the fin.

Lesley Buxton, 1999

 I wrote this poem about India when she was two years old. I’d been thinking about how eventually children leave their parents to explore the world and how difficult it was not to be jealous of the other people they’d meet and love. Back then, the possibility of losing my daughter seemed years away, but I could imagine how when the day came for her to go it would hurt. At the time I was working with the poet Diana Brebner, who was also a mother, and often we’d talked about how motherhood changed a person’s perspective. Diana felt it had her made her more accepting of “the messiness of life” while I was surprised to discover how open and vulnerable I was to the world. I suddenly felt connected to people who in the past I’d never have taken the time to know, all because I could identify with how much they loved their children.

About a month ago, while driving home from Ottawa to Lascelles, I listened to a documentary on the CBC about a woman fighting for the rights of female inmates to keep their babies with them in prison. The interview took place in the woman’s kitchen while she was making cookies with her daughter. In the background her little girl chatted non-stop as the interviewer asked the mother questions. I could tell from the little girl’s sing-song voice that she was around three and that she adored her mother. A feeling that was clearly reciprocated. It reminded me of watching India make piecrust with my mother at the same age and the pleasure she seemed to get from learning something new. I wished I’d taken more time to savour that moment.

The interviewee was an articulate woman and I was moved by the sincerity with which she expressed her plight and those struggling in similar situations. But suddenly without any warning I was filled with rage and began shouting at the radio “I’ve never done anything wrong! Why should I lose my child but you get to keep yours?”

I now understand what angered me about the interviewee was that I sensed she felt victimized and in my irrational state I was unable empathize with the circumstances of her life that had led her towards the choices she’d made. In other words, I hadn’t considered what writers call her back-story. Instead everything seemed black and white. She’d made a mistake, she deserved to be punished. I, on the other hand, was innocent of any wrong doing therefore a real victim. When my outburst was over I felt ashamed. As a feminist and a mother, obviously, I’m deeply concerned with the rights of all parents and believe strongly that as a society we should support those who are struggling. But I’d allowed myself to be engulfed in hatred and jealousy. Immediately I understood this is how people become bitter. Clearly I don’t want to become this way nor do I wish to consider myself or my daughter a victim. We are fighters. Survivors.

I don’t want to make it sound as if I’m a saint who’d never experienced bitterness before. It’s always been an ongoing dilemma. In particular when it comes to our experiences within the medical community. When I look back, what I can’t understand is why not one doctor admitted they’d never seen a patient like India before. This includes a variety of alternative health professionals as well as one of Canada’s top experts in childhood epilepsies. Why did nobody admit they simply didn’t know? I can’t express what a relief this would’ve been. Where’s the shame in not knowing? I’ve read lots of books but I don’t pretend to know what they’re all about. Instead we received one useless diagnosis after another. My current theory is that these specialists were all so blinded by their specific expertise that they couldn’t venture outside them or entertain the notion that it was beyond their understanding. This may be understandable, but it’s hard to forgive especially as frequently Mark and I were made to feel as if our observations were silly or superficial or unfounded. What if three-years ago, while we were staying at Sick Kids, one of the neurologists had disagreed with the diagnosis and said we need to study this girl further. Perhaps we might be three years into the kind of research that is currently going on. We might have more answers. We might have a treatment. Of course, this is only conjecture. There’s no way to know this.

I also don’t want to give the impression that anybody has given up on India. Many people are still working hard to solve the mystery and we’re incredibly grateful for their unyielding devotion. Currently her neurologist, a man I like and respect, is preparing a paper about India with a colleague in genetics that we hope may lead us towards a drug or better yet a cure while the team at Ottawa University continue studying India’s cells. Still often when I’m driving home from work and I head up the hill from Alcove towards Lascelles, my body starts to hurt. A tightness builds in my chest as though someone has a hold of my neck and is squeezing the breath out of me. Hope is difficult to sustain. It takes a physical toll on a person.

I’ve always been fascinated by people and what prompts them to make the choices they do. Whenever somebody acts unexpectedly towards me, I always want to know why they acted the way they did. This need to understand what motivates people is, I suspect, one of the reasons I write fiction. It allows me the opportunity to gain perspective and I hope, empathy. As India’s illnesses progresses I’m increasingly aware that I’m changing. No matter what the outcome of this ordeal is, I will not be the woman I was six years ago. Never again, will I experience the feelings of invincibility I once enjoyed. I understand only too well that bad things don’t just happen to other people. But it’s my goal, no matter what arises, to keep an open vulnerable heart.


5 Comments Add yours

  1. p. says:

    I suddenly realize I haven’t seen India for two or three years. And now, look, she is all grown up. I love her lipstick colour. She has such great fashion sense. The scarf and shirt are perfect. Thank you for this, Lesley. Beautifully done.

  2. Eedie Wallace says:

    Dealing with illness is hard enough without having to deal with the medical system that often “pushes you through”, can’t answer questions and as you say, can’t admit they don’t know. I have experienced this BIG TIME in my life and past illnesses too.

    My wish for you and your family is that there will be one doctor, researcher, nurse, other health care professional or person who will say, “Hey, wait a minute! Can’t we…do no harm/do more/look further/try again, try harder/talk to…?”

    It just takes one. Keep the faith!


  3. jane G (nee B ! ) says:

    hold on to the invincible heart………we send you all our love………..xxxxx

  4. Kiley says:

    I am just so sorry for what your family is going through. Please know how many people are thinking of you and applauding your courageous, effective campaign.

    1. onmefall says:

      Thank you so much

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