A Hope for Emily

James asks practical questions about the facilities, the music therapy and massage room he seems so keen on, while I listen numbly. I already play Emily music. I already massage her limbs, rub cream into her dry little hands. She didn’t need to come here for that.

Finally we are back in her room, and I breathe a sigh of relief. The doctors and nurses are leaving us alone, and I am glad, because right now I just want to reconnect with my little girl. James stands in the doorway, watching me as I sit next to Emily and start to brush her hair, stroke by gentle stroke.

“This seems like a good place,” he says, and I can’t make myself reply. He knows how I feel. “I think Emily will like the music room.” A pause that feels breakable. “Remember how she used to love to dance?”

For a second I close my eyes, picture the scene: the kitchen of our old house in Newton, the one we were going to have at least two, maybe three kids in. I turn some music on my phone, and Emily races from the family room as soon as she hears the beat. Her eyes are alight, the sunlight turning her baby curls to gold. She’s not quite two.

“Dan!” she calls out as she starts to wiggle her hips and flail her arms, throwing herself into the movement. I know she means ‘dance’. “Dan, Mama!”

And we dance, with me taking her hands and leading her in a little, laughing box-step, but after a few seconds she wrenches herself away and starts twirling on her own, caught up in the sound, in the moment, everything about her so joyful that all I can do is look at her and laugh. She’s beautiful. She’s so, so beautiful.

I open my eyes and gaze down at the limp curl lying against her forehead. Her gaze moves towards the door and back again, making my heart lurch, but Dr. Brown has told me—again and again—that it’s just a reflex. I know it looks promising, but I’m afraid it doesn’t signify any awareness. It would be a cruel thing to say, if his tone hadn’t been so kind.

I take a deep breath. “Of course I remember. But please, James. Don’t… don’t talk about her as if she’s dead.”

Another pause, as tense and fragile as the one before, starting to splinter. “I didn’t mean to,” he says quietly.

I start brushing her hair again, and then fasten a sparkly pink butterfly clip to keep it from sliding into her eyes. It’s grown a bit. She’ll need another trim, something that is my responsibility.

“I suppose I’ll head back to work,” James says after the silence stretches on, suffocating and heavy. “I’ll come here tomorrow, as usual…”

“Okay.” Generally, during James’ visits, I try to stay for a few minutes, to pass on any relevant information, but I’m not sure I can do that anymore. Not if we’re going to always have this between us, this heavy burden of disappointment and difference in the way we see not just Emily’s care, but Emily herself.

After another moment he leaves, and I take out the bottle of nail polish—bright pink, Emily’s favorite color. She used to insist everything was pink—her clothes, her cup, her bedspread. For her fourth birthday we gave her a pair of sparkly pink shoes she was barely able to wear, before she lost her mobility.

I wonder if she would still like pink now, if she could tell me so. I wonder if she would have moved on, found pink too babyish now that she’s nearly six. Maybe she’d have become more of a tomboy, or maybe she would have gone through what seems like the inevitable princess phase, complete with tiaras and tutus.

We never found out, because when all the other four-year-old girls in her preschool were insisting on dressing as Elsa every day, Emily was forgetting how to talk. Having a seizure. Spending three weeks in hospital until we were released for another stint at home, until something else happened and we were back again, and then eventually we were there all the time.

In my alternate life, the one I can’t bear to fantasize about but do anyway, Emily would be in kindergarten, learning her letters, getting ready to go into first grade in the fall. She’d be able to sound out words, and be learning to ride a bike, and maybe she’d even have a little brother or sister. We’d been starting to try again when we first noticed Emily’s symptoms; we’d both wanted another child and I was thirty-eight already. We put it on hold, by mutual agreement, after Emily’s first seizure, when we realized this was serious. Even then we had no idea how serious it would become. How we would end up here.

After I finish Emily’s nails I go to the kitchen area to make a cup of coffee. My body is aching with tiredness; I spent another sleepless night yesterday, anticipating today, spending too long online trying to find miracle cures when I know there aren’t any. But I still try. I

have to try, as long as Emily is breathing and being.

Now I switch on the electric kettle, my shoulders slumping as I stand there, my eyes roving blankly over the printed notices about keeping things in the fridge and wiping down the sink, along with the host of support numbers, including the suicide prevention lifeline.

As I’m waiting for the kettle to boil, a woman comes in, tired-eyed and slumped-shouldered like me. She shoots me an uncertain smile which I make myself return as she goes to the fridge. There is an etiquette to hospital wards and sick children that I’ve learned over the last two years. You don’t ask. Everyone tries to be supportive, and you might share some vague information— “Taylor has a scan today” or “We’re discussing Brody’s latest tests”—but you don’t generally volunteer more information than that, and you definitely don’t ask questions of other people.

And so I don’t now, as I step aside so the woman can access the fridge. She takes out a carton of two percent milk and nods towards the kettle. “Do you want some?”

I am startled out of my thoughts, as if she’s penetrated an invisible shield around me. It takes me a second to realise she means the kettle, my coffee. “Oh yes, thanks,’ I half-mumble, and we work in silence, spooning granules, sharing milk.

At the end of this awkward little ritual, I heft my cup in thanks, and then retreat back to Emily’s room. I’m not strong enough for even those innocuous conversations. I don’t have the emotional space to wonder about her life, her child, and yet my gaze tracks her as she walks down the hall, slipping into a room two doors down from Emily. Before the door closes I glimpse a man sitting in a chair, his face set in haggard lines. I go into Emily’s room.

Her eyes are closed now and I decide to put on some music—Baby Einstein’s Lullaby Classics, which I played when I was pregnant and then, after she was born, when she was going to sleep.

Would she have outgrown these by now, along with the color pink? Of course I don’t know. Perhaps she can’t stand Baby Einstein anymore, and she isn’t able to tell me. The latest research suggests that patients in a state of unresponsive wakefulness may be more aware of their surroundings than we realize, a possibility which gives me terror and hope in equal, overwhelming measure.

I think once more of Martin Pistorious, the South African man who had been conscious but unable to communicate for years. They’d seated him in front of a TV playing endless episodes of Barney for hours at a time; he couldn’t stand it, but he hadn’t been able to say anything. What if Emily is the same—struggling to communicate, trapped inside her body, desperate to reach me?

As I sit and sip my coffee, I gaze at her face; her eyes are closed and her lips are slightly pursed, the way they used to be when she slept, as a baby. I can’t see anything in her slack features that tells me she can hear the music, hear me, but I still hope she can. I hope she knows I am here, and she is comforted. I can’t stand the thought that she might be afraid, that she might not understand what is going on, that she might feel lonely or frightened or hopeless.

I lean forward, needing to reach her, even if it’s only in my own mind. “Baby girl, it’s Mama. I love you. I’m here and I love you so, so much.” My voice becomes huskier as I say each word, and I take a shuddering breath. In the hallway I hear someone crying quietly, like an apology.

I’ve got to get Emily out of here.

I’ve got to get Emily somewhere she can find hope.