A Hope for Emily

The unit is quiet as I am buzzed in, but then it is always quiet. Everyone here talks in murmurs and whispers, even the nurses. There is an almost sacred feel to the space that I want to ignore. As I head towards Emily’s room, the nurse at the station gives me a kindly, sympathetic smile.

I’m so tired of sympathy. At first, I lapped it up, grateful that people cared enough to at least address what was going on in my life. Tragedy so often makes people ignore you; they act as if it’s catching, or it’s simply too awkward for them to bear, never mind you.

The acquaintances on the periphery of my life did just that. They gave me fleeting smiles at preschool and then dodged conversations, not that I would have started talking, because when I did people listened but looked elsewhere, fixing their gaze above my head or slightly to my right.

When Emily left preschool because of her health, my circle of friends grew smaller. I still had some then—Denise, from work, who texted me regularly and would drop off meals, and Sara, a mom I met at a Mommy and Me class, before I went back to work, who would ask how I was, waiting for the real answer, which sometimes I gave.

But even Sara and Denise stopped making an effort a while ago now, and I don’t blame them. I’m never around, and when I am, I don’t want to talk. I resent them, even though I know I shouldn’t. They don’t understand why I am still going to the h

ospital every day, and when Denise hesitantly asked if I had to, a rift opened up in our friendship that I knew would not be healed.

“No, I don’t have to,” I’d answered with a distinct edge to my voice. “If you mean by that is there some rule book, or someone putting a gun to my head, to make me spend time with my daughter?”

“I’m sorry,” she’d stammered. “I only meant… it must be exhausting.”

Except she didn’t mean that at all. Now I think even the nurses are wondering why I keep coming. Most children in the palliative unit are here for a relatively short time; that’s the nature of the place, after all. So parents camp out, friends and relatives come in and out, as everyone waits for the end, which is going to happen in a few days or weeks, or maybe just minutes.

But Emily isn’t like that. She’s here for the foreseeable future, however long that may turn out to be. I know there is one other child in a condition similar to Emily’s in the unit, and his parents come in a couple times a week. I’ve seen the mother once, still in her work clothes. I tried not to look accusing.

Because if I did that, if I went back to my job, even part-time, or jogged in the morning or spent an afternoon having coffee with a friend… I will have given up.

And I am so far from giving up. The new research I’ve done into the nerve stimulation I mentioned to Eva buoys me, urging me forward. I Skyped the doctor a few days ago, a kindly-looking man named Marco Rossi, from the Centro di Neuroscienza in Bologna who is pioneering the research in Italy, after it was started in Lyon, France.

He made no promises, of course, but he sounded so positive. He thought it was worth trying. He warned me that results could be minimal, but they could be there.

As soon as we’d finished the call, I wrote down as much as I could remember. I printed out all the research I could, although there wasn’t all that much of it because the treatment is so very new. I even drew up a preliminary budget, since our health insurance won’t pay for experimental treatment in another country, and tried to think of all the hidden costs, all the things I might not be expecting.

Of course, James won’t look at any of it, no matter how many emails I send. I am hoping that Eva can convince him to. It’s been four days since I spoke to her, and I haven’t heard anything from James. I have no idea if Eva did what she said she would, and my ex-husband didn’t listen, or if she chickened out, or maybe didn’t care in the first place?

If he doesn’t get in touch by Tuesday, I tell myself, I’ll call him again. I’ll make him listen. Somehow.

Emily has a quiet day, sleeping for most of it although she does wake up—if I can even call it that—for a few hours in the afternoon. I take off the polish on her nails and wash her hair, brushing it carefully. I talk to her the whole while, although the sound of my voice is starting to sadden me. How long can you talk to someone without ever hearing anything back?

As the sunlight fades from the sky, I gaze down at her slack face and unseeing gaze, and wonder, for the first time, if I should keep going down this lonely route. Or if I should, as James wants me to, let her go.

My heart feels as if it’s been wrenched within me as I stroke her hair, and then reach for her hand. How can I be thinking like this? I never have before, not in all this time. I’ve held onto hope so hard.

And yet… outside the last of the light is being leached from the sky. I missed the whole day; I’ve missed every day. My skin is dry and flaky from being inside all the time; I can count the people I talk to regularly on one hand, practically one finger. My life has been reduced to this room, this silence…

If I let her go, I could go back to work. Make my house a home instead of just the place I sleep. Maybe even meet someone new. Rebuild my life from the rubble.

As soon as the thoughts flit through my mind, I am flapping them away, furious with myself. How could I betray Emily like that? How could I possibly live with myself if I just walked away from her, because I was tired of trying?

I lace my fingers with my daughter’s and silently promise never to think like that again. I will her to squeeze my fingers, to feel me, will it with every desperate fiber of my being, but nothing happens. This time.

It doesn’t matter, because I am determined. I won’t let myself waver again.

* * *

It’s dark by the time I pull up outside my house, and the van is gone. There are lights on in Andrew and Jake’s side of the duplex, and as I get out of the car I see their silhouettes moving in front of the window, hear music, some kind of jazz, drifting from the open window. The air smells of barbecue, mouth-watering and smoky.

I hadn’t even realized my former neighbour had moved out, or that the place was for sale, which says something about how much I’m here, but now I witness these signs of life, of love and happiness, and something in me aches.

I am at my own door, reaching for my keys, when Andrew comes out onto his stoop.

“Hello again,” he says, and I give him a tired smile.

“You just got back?”