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Music should be your escape-   Missy Elliot

India and I like to talk about the tattoos we want. I want a black Underwood typewriter. She wants an Arthur Rackham style illustration of a lark with a bandage around its wing. This seems fitting to me. I can’t remember a time when India didn’t sing. Some of her friends were still stumbling on words when she could sing her name back to me on pitch.

The only two classes India ever asked for were voice and riding. She was ten when she started voice classes. Her teacher, Caroline Gibson used to say, “I bet you’re always singing.” And, India would smile and say, “Yes. All the time.” She even used to sing in her sleep. We’d wake-up in the middle of the night and hear her. It was beautiful but melancholic like the soundtrack of a 1960’s horror movie.

When I was still teaching drama I got a call from a Dad, who was concerned because his twelve-year-old son wanted to take my workshop. “What if he wants to be an actor. I don’t want him to be an actor,” he complained.

I remember carefully explaining to him that studies demonstrated that kids who studied theatre had better skills in: team building, comprehension, and brainstorming techniques. Studies also said they displayed more empathy and compassion. At the time I remember thinking what a strange attitude. After all we don’t assume because a child learns hockey that they will end up in the NHL—well, some may. Most I’d wager, hope that their child will gain a hobby that will not only teach them important social lessons but serve as both a good physical and emotional outlet.

Not long ago I heard an interview with the writer Natalie Goldberg, where she described her relationship with writing as the longest she’s ever had. This touched a chord in me. Our passions are what sustain us in times of crisis. Throughout India’s illness, she has spent many Saturdays in bed, exhausted by the school week, but she’s rarely complained. Instead she’ll lie in bed all day singing everything from the soundtrack of “Rent” to the Disney’s “The Little Mermaid”.

I’ve always suspected that India’s love of music is the major reason that she hasn’t been consumed by bitterness. This suspicion may be correct. According to research by scientist, Hans Guenther Bastian from the Institute of Musical Education at Frankfurt University singing aids our immune system and enhances our moods. (Another strange fact is that though India’s health is compromised, she doesn’t get as many colds as Mark and I do.)

Frequently when India’s been hospitalized we’ve had to tell her not to sing in case she disturbs her roommates, this always makes me feel as if I’ve ripped off her blankets and left her vulnerable to the cold. I envision her singing rather like some sci-fi super-sonic protective shield that the horrors of the hospital are unable to penetrate.

Over the years I’ve used India’s singing to gauge the effectiveness of her medications. If she’s on pitch it’s working, if she sings slowly, or is off-key it’s not. At one point early in her illness she started going deaf. When we asked her specialist if this could be a side-effect of the valproic acid we were assured that this was not a possibility. Extensive hearing tests proved only that she couldn’t hear, nothing more. When we asked the audiologist he just shrugged. Many months later when she went off the medication to try the M.C.T diet her hearing miraculously improved. Though the diet ultimately proved unhelpful, at least it was clearer which symptoms were authentic to her disorder and what were brought on by the meds. Now-a-days I have no idea.

Since India was released from the hospital in June she no longer sings or listens to music the way she used to. This worries me. I don’t know if this is because of the drugs or the exhaustion. When I was a child we played a game called “Operation”. Players used a pair of tweezers to remove parts of the patient, Cavity Sam’s anatomy without setting off the buzzer. These days this is how I picture India, pinned flat on the table like Cavity Sam, but instead of removing her anatomy, her talents are stolen bit-by-bit.

Several weeks ago Mark and I met with India’s principal and two special needs advisors to discuss a plan for her. She’s an intelligent girl, but the continual head drop seizures—she has about four a minute—combined with the meds that cause her to be hard of hearing make learning difficult and slow. Naturally there are the usual problems as well, she’s got great comprehension skills but can’t spell or multiply. School exhausts her so homework is difficult. Plus she has the customary teen resistance to having her parents help her which is probably exacerbated by the fact she resents how reliant she is on us already. India is an independent spirit. To say the situation is challenging is a vast understatement.

Overall I was satisfied with the meeting but I left it feeling sad. Mark and I don’t get to do any of the nice things that go with parenting. For us there are no choir performances or games of soccer. All we deal with are the problems. I’m sick of being the bearer of bad news and the endless meetings. I miss the joy of watching India having a good time. I hate that India is now identified by her illness, the way another kid may be with their particular gift.

Not long ago, I was shocked when someone said to me “It’s your daughter that’s the epileptic.” Can you imagine? I’m pretty sure that person wouldn’t have liked if I’d identified their child by their physical weakness.  For example what if I said: “It’s your son that’s really, really mean” or “who’s got the really big nose”. Instead I said, “My daughter’s India and she has epilepsy.”

Last week we discovered that we might soon have some new information on India’s condition. In April, Mark, India, and I took part in a genetics test through an experimental program organized by McGill University. The news at present is incomplete and there are still tests to be done before I can share what we’ve learned. I expect we’ll know in the new year. It seems a long time but in the scheme of things it’s not. After all it’s been five years. I’m trying my best to stay neutral but I see-saw between hopefulness and fear. In the meantime my plan is to get my daughter singing again. I’m playing all her favourite music. Our India is still here, she’s just hidden from us like the small wooden baby in a set of Matryoshka dolls. And my job, as her mother is to figure out how I can open up all the dolls so I can free her.

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