Faith is a passionate intuition-William Wordsworth

India wants to dance at her Valentine’s Dance. She hasn’t walked since December 23rd. When she tries she looks like a marionette being controlled by a drunk. Her limbs wobble, shake, her knees fold beneath her. Her father carries her up to bed at night. She goes down the stairs on her bum. She got her dress for the dance ages ago.  It’s black, tight in the waist, strapless. She plans to wear it with crimson tights. I’ve told her lots of people dance in wheelchairs. She smiles when I say that but she doesn’t seem convinced. At present, she exists in a strange limbo state never sure how her body will behave when she wakes up in the morning.

On January 6th India and I were enjoying a lazy afternoon watching “Chicago” when she said her hand felt funny so I took it in mine and held it. In the past, this has helped when she’s shaky. This time it didn’t. The strange sensation continued to travel up her arm. She was scared so I cradled her. The shaking became more aggressive.  Just before she was enveloped by the seizure she whispered, “I love you, Mummy.”

I kept talking to her. Her eyes were open but I couldn’t tell if she could hear me. Later on I found out, she’d heard everything I said. The seizure lasted about two minutes. We were able to ward off a second episode with a dose of Ativan. When India came round she was scared. She asked me to sing. So I held her in my arms and sang. I kept running out of songs so I kept repeating myself. She was scared of it happening again and wanted to go to the hospital. We were as well. So we gathered what we needed and drove to CHEO.

Emergency wasn’t very busy when we arrived so we were promptly placed in a consultation room. We waited there for five hours while the resident and the doctor-on-call talked with our neurologist and the neurologist-on-call.  At midnight, India was given a bed on the fourth floor on the West wing. The room was massive and freezing. Luckily we had brought several extra blankets for India. I slept on the blue vinyl pull-out chair. The nurse gave me a pile of thin cotton hospital blankets, nevertheless I had to sleep with my coat on. The ward was exceptionally quiet except for the occasional sound of a young child in a nearby room crying. It wasn’t until I ventured out into the hallway that I noticed many of the patients were in isolation and that we were staying in oncology.

The next day in the playroom as I searched for teen DVD’s, I spotted two boys about eight-years-old, both bald, enjoying a video game that featured to overgrown furry spiders. Their enthusiasm reminded me of the boys I used to teach.  On the way back to the room I met another mother. She was standing outside her child’s room hurriedly eating from a Tupperware container. An isolation sign hung above the door. “He can’t stand the smell,” she told me.

Over the past two-years, India has spent about thirty-five days in hospital. During this time we’ve learned how to adapt. We bring tea, knitting, drawing supplies, and our own bed-clothes. We know how to make these stays bearable by watching DVD’s, hours of YTV and reading trashy magazines. A nurse who offered to find me a kettle was shocked to discover I had one. “I went to boarding school,” I explained. “The hospital’s not that different.” But unlike school, where our days were punctuated with bells, in the hospital, one hours bleeds into next, nameless and unremarkable.

Despite this, each time I find the process more draining. We go, we come-back. Nothing changes. This last episode was particularly heartbreaking. I’d hoped we’d find out why India’s legs didn’t work. After five days and daily meetings with three doctors, six student doctors and two neurologist, the only thing I was sure of was that none of us knew the answer. I’d met the on-call neurologist three-years before. Our first meeting wasn’t good. When I heard his diagnosis, I started to cry and he said, “Why are you crying? We have drugs.” This time he reminded me that we’d met before and I wondered if he’d remembered what he’d said. On this occasion he was very kind. Still I fantasized about pushing him up hard against the wall and screaming, “I thought you said you had drugs.”

The night we were admitted, the doctor who greeted us on the ward spent half-an-hour listening to India’s case history. I told him I was very confused, that this shouldn’t be happening because India was in ketosis and on top of all her meds. We’d being doing everything right. And that in the past, events like this were the consequence of some sort of trauma. He told me he’d been specializing in endocrinology and that what they found with those disorders was that the teenagers were always the hardest to treat. Every time they’d start to get results, the teenager grew and it was back to the drawing board. India had recently gone up two jean sizes.

The outcome of this last hospital stay is that India is on a new drug. This medicine has a different origin from the others she’s tried in the past. Plus the MCT oil is supposed to help with its absorption, So far, she’s up to half her eventual dose. I can see an improvement. She’s more energetic and engaged. There’s reason to believe this will continue. The problem is we’ve tried drugs before and they always stop working so it’s not easy to have faith.

Recently I read that mothers of chronically ill children are more likely to complain of: muscle pain, joint aches, headaches, anxiety and depression than mothers of healthy children. The majority of mothers on our ward were either overweight or very underweight. They all looked tired. I know how that feels. Of late, I’m so tired that I can no longer rely on my intuition. I realize many people will think that’s flakey. Who makes decisions like that? But two-year-ago, while we were waiting for the results of the genetic testing I knew in my gut that India didn’t have anything fatal. Now I have no idea of what these latest developments will bring. So I search for signs and worry. These days the refrain is: Please let this treatment work, please let this treatment work, oh please let it work so India can dance.