I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars.
Today I watched some of Disney’s Little Mermaid with India. She was feeling sad so I lay in bed with her, counting to myself every time her head dropped and she had a seizure. I lost count after a while. Four-years ago, I watched her and her cabin mates perform the song, “Kiss the Girl” from the movie in a camp talent contest. She surprised me that day, moving effortlessly across the stage, a performer completely engaged in the moment. I was nervous that she’d have a seizure and hurt herself but she didn’t. I remember not wanting to watch because I was so scared. Now looking back, I can’t help but admire her audacity. How brave she was to get up on stage when she knew she could collapse at any moment.
The original story is crueller than the animated version. In it the mermaid sacrifices her voice which is said to be beyond compare to a sea witch for a pair of legs so that she might walk on land and see her prince again. She’s told by the sea witch that drinking the potion will make her feel as though a sword has passed through her. But in return she will be receive the gift of dance however she will be in constant pain as her new legs they will throb as if being cut by swords. The mermaid doesn’t falter and agrees.
The other morning India told me if she could use her legs she’d run away. I told her I wouldn’t mind running away myself. She said, “You can. You can use your legs.” She didn’t make the statement bitterly, but I felt guilty. This is a dominant force in my life these days. It goes without saying that if there was a magic potion that would allow me to take her place I would drink it. I don’t dare contemplate what India feels about her condition. If I do I’m so overwhelmed that I’m immobilized. I have to keep a distance in order to maintain control. I rarely allow myself to reflect on the future or the past. I do my best not to cry in front of her or others. If you have ever waited for a loved one to return from surgery, you understand what Mark and I experience daily. It’s like travelling an unknown highway when you’re running out of gas and you have no idea where you’re heading. The stress is debilitating. Regularly I wake up at night to find my hands curled in tight fists.
The landscape of our existence is difficult to describe. India has almost no control over her limbs at all so she requires full care. Feeding her breakfast can take over an hour. Yet her daily care is the least of our challenges. Although she’s an intelligent young woman communication is arduous because of the constant seizures. We have to repeat sentences over and over. We don’t want to her to know how hard it is for us to understand her but at the same we want desperately to know what she wants. From an early age she was an articulate child speaking in sentences when many of her peers were still trying to string a few words together. Now her voice quavers as if it belongs to someone many decades older. And then there’s her emotional health, obviously we do our best to make her happy, but she’s a sixteen-year-old girl filled with dreams that I’m certain don’t include her parents.
Five weeks ago, we began an experimental treatment which requires India to eat twenty-grams of soy nuts every four hours, three times a day along with the usual regimen of medications she takes every six hours. Experiments on India’s cells at the University of Ottawa revealed that a chemical contained in soya nuts known as genestein increased the production of acid cermadise (the enzyme she lacks) by twenty to thirty percent. Clearly, we have no idea how this will influence India. So we live in limbo, not the peaceful limbo of the unchristened babies, more along the lines of the Limbo of the Patriarchs, but unlike those poor souls waiting endlessly for Jesus to free them, we wait for her new treatment to take effect. We study her for clues, question our evaluations, and worry that we see things that aren’t there.
The first time I took India to the theatre she was six weeks old. I sat at the back ready to bolt if she woke-up. She didn’t. Afterwards in the refreshment tent I chatted with a drag queen in a sparkly gown who cooed over India and admired her vintage dress. I don’t know if we are affected by the things that happen to us as infants but I like to believe this event is stored in her. Even before she was born I tried to share stories with her. When I was pregnant I used to press my belly against the stereo speakers and play her my favourite music. I always felt a lot of kicking when I played John Lennon. These days she more inclined towards Green Day and the Red Hot Chilli Peppers. Despite her limited movement she does a hilarious imitation of Flea coiling his stomach.
Next week we’re supposed to get the results of a blood test that will tell us if the genestein is working. Usually I have a sense about this sort of thing but my intuition is weirdly silent. Fairy tales and fables are filled with tales of adolescent girls that defy great obstacles but never without sacrifice. Even in real life this is common, many of the artists I admire were ill as children. Joni Mitchell for example, suffered from polio as a girl and spent hours on her own. In the end this is little solace. I just want India to be healthy. These days I question many of my previous notions about what makes a person successful. It’s not our accomplishments but rather how we face adversity. None of us is immune to pain. We need to prepare children for those unexpected trials. Teach them to celebrate their humanity and strength. My daughter can no longer explore her numerous talents, yet I’m proud to say she remains herself: open hearted, imaginative, kind and brave. Quite a feat, considering the spell that’s been cast upon her.