A Hope for Emily

I stiffen at that, because he’s never, as far as I can remember, left early. He’s never not seen the point. I walk to the kitchen, telling myself not to ask. Not to stir that damned pot, because everything is fine and it can keep being fine.

Except, I realize as I reach for the wine bottle that is always in the fridge, it isn’t really fine. On the surface, yes, but the truth is I’m sinking a glass or three of wine every night, just to blunt the edges of everything. I’m starting to hate my job. And the list of things James and I don’t talk about is becoming longer than the list of things we do.

I am not fine. We are not fine. I want more than this—for me, for my marriage, and yes, for Rachel.

Slowly I pour myself a glass of wine and take that first, much-needed sip. From the living room I hear James slurp a noodle. I walk back towards him, standing in the doorway of the living room, surveying the scene—the squashy leather sofa I love to curl up in, the carton of sesame chicken on the table that James knows is my favourite and has no doubt left for me. The warm light from the floor lamp we picked out at Room & Board pools on the floor in a golden circle; it cost more than we could afford for a single lamp but we both loved it and we were so excited to make a home for ourselves.

It would be so easy, so wonderful, to curl up on the sofa next to James, idly ask what he’s working on, nibble on a piece of sesame chicken. I want that so much, it is a physical sensation—a twisting of my gut, a pressure in my chest, a deep, deep ache to just be.

Why can’t life be easy?

But it’s not easy for Rachel, and it’s not easy for me. And so instead of doing all that I sit in the armchair opposite, just as Rachel did two weeks ago, and I sip my wine. “Did you ever talk to Rachel?” I ask, trying to make it sound like a matter of general, casual interest. “About the experimental treatment?”

James looks up, his chopsticks—he never uses a fork—halfway to his mouth. His look is instantly guarded.

“I emailed her,” he says after a moment. “To say the subject is closed, for all the reasons I told you before.”

“And she let it go? She’s okay with it?”

“As far as I know. She hasn’t been in touch.”

Fine. I should leave it there. It wasn’t my job to convince James, just to talk to him. That was all Rachel asked of me, and I did it. Yet as James returns to his laptop, the discussion clearly over, I sip my wine and think of Rachel.

Four weeks Emily has been in palliative care. Four weeks of watching, wondering, waiting. Has she lost hope? Has she given up?

I realize I can’t stand that thought. No parent should ever have to give up on their child, not when there still might be some hope left, no matter how small. No matter how slight.

But what can I do about it?

I tell myself nothing even as the answer forms in my mind, taking shape with every passing second, gaining texture and weight. I know what I can do. I know what I’m good at, and how I can use it to help Rachel… if I dare. Do I?

I stay silent, sipping my wine, letting the moments slip by as James relaxes into the evening and my mind continues spin.

13

Rachel

“Hello?”

I call out, my voice echoing through my mother’s dark and empty house empty as I walk down the hallway towards the kitchen, where she is almost always bustling around, waiting for me. I decide she must be in the garden; she’s always loved her flower beds, and the beautiful weather has held. It’s almost June, and everything is burgeoning, the blossoms ridiculously blowsy.

I haven’t seen my mom in over a week, mostly because there has

been nothing to report. Emily’s condition remains unchanged. My battle for experimental treatment has come to nothing, thanks to James’ terse email informing me he’d read all the research and he still wouldn’t discuss it because he doesn’t believe it is ‘helpful for either Emily or you’. As if he knows what’s helpful for me.

I’ve thought about contacting Eva again, asking her if she ever talked to him, but I can’t bring myself to do it. In the end, it doesn’t matter anyway. James knows I won’t start a big legal battle, although last week I did look into it. I spoke to a lawyer whose name I got off the internet, a sharp-voiced woman who promised no fees unless we won, but I didn’t like her manner. She sounded ruthless, and the way she talked about Emily, so coldly yet with a syrupy overlayer of false sympathy, had me silently clenching my fists.

So I decided to speak to someone else, someone recommended to me from a Facebook group for parents of disabled kids whose posts I can only bear to read every few weeks, because they’re all so desperately upbeat, trying to act as if everything is okay, as if our children aren’t in desperate circumstances.

Another mother gave me the name of someone really good, or so she said, and yet I found this lawyer even harder to talk to, because she was so terribly kind.

“I feel for your situation,” she told me. “I really do. And normally I would advocate exploring absolutely every avenue for treatment and diagnosis of a seriously ill child. But with what you’ve told me about Emily’s condition as well as the rate of deterioration she’s experienced so far, I think a legal battle, in this instance, is most likely unwise. It will end up costing you a lot of money, and there are no guarantees that you’d win. The treatment is just too new. Too experimental, without enough data to show its value. If you wanted to try another kind of therapy, something that’s been more tested, is already in clinical trials…”

“Like what?” I asked, trying not to sound either angry or hopeless, and the woman’s apologetic silence was answer enough. I hung up the phone, not caring that I was being rude. Why was I always running up to a dead end, a determined no from every quarter?

Except for Eva. She’d said she’d do something, but if she has, it hasn’t worked. And so I’ve let the weeks slide by, and I’ve sat by Emily’s bed, and I’ve felt my hope start to drain away, which is the worst feeling in the world. Almost. I know there is a worse feeling, but I’m not thinking about that yet.

“Mom?” I call again as I open the back door that leads to the yard, a strip of lawn bordered by flower beds that are bursting with colourful blooms. I can tell from the stillness, however, that she’s not out there, and I start to feel a little bit uneasy.