A Hope for Emily

The last few months, ever since we came back from Italy, have been hard. They have felt endless, and yet far too short, because they have been leading, always leading, to an end, and there is part of me that needs and craves it to come, and part of me that can’t stand the thought.

Emily has continued to steadily decline, her brain function growing less and less. I see it, I feel it, and for once I don’t fight it. Whatever condition—whether it was a virus, a blip in her DNA, a mystery—it is taking her life. I accept that now, in a way I was never willing to before.

When I first returned from Italy, it was with a sense of finality. I’d done all I could. My sense of striving was gone, replaced by a numbness that I was afraid to test. What deep emotion was lurking underneath it? Did I want to know?

“You’ll find out eventually,” Andrew told me with a wry, sad smile as we shared a takeout pizza. It was August, and the weather was oppressively muggy, the kind of day where you broke a sweat before you’d gotten out of bed. “Emotions don’t hide away forever. They bubble up, like lava.”

“I know.” You couldn’t hide from grief. Delaying tactics were just that. “I only hope I’ll be ready for it, when it comes.” I put my half-eaten slice of pizza down, my gaze on Jake scrambling over the little plastic jungle gym despite the heat. He was full of joy; he had blossomed since coming to Boston, leaving the past and all its hurts behind.

“I’m scared to get my life back,” I confessed to Andrew in a low voice. “Even beyond what that means for Emily. I’m scared of what it will mean for me.” I looked at him bleakly, trying not to feel guilty for having these thoughts, for being scared for myself instead of focused on my daughter

. “I’m not sure I even know how to be anymore or whether, outside the hospital, I even exist.”

Andrew reached over and held my hand, and I let him. I’d been trying to allow more people into my life—James and Eva, and now Andrew. Even my old friends Sarah and Denise; I’d texted them both recently, and they’d responded right away, seemingly eager to be back in touch. But it all felt hard, like exercising muscles you’d forgotten you had. The stretching was good, but the pain made you question whether it was worth the effort.

“You’ll learn how to be again,” Andrew said. “It may not be easy, or quick, but it will happen. And I’ll help you. If you want me to.”

I nodded, not trusting myself to say anything more, or even knowing if I had the words.

I visited my mother, soon after coming back from Italy, and realized she had declined even more in my absence, which gave me another load of guilt to wrestle with—should I have stayed, seen her through this? Was it worth it, the time and money and energy and hassle, to take Emily to a place where she didn’t get better?

“Of course you needed to go,” my mother told me, even though I hadn’t actually voiced my fear. She knew me too well. “A mother needs to do everything she can for her child, no matter what.” Her face softened, and I realized she was not just talking about Emily and me. She was talking about herself. “No matter what,” she said again. Had my mother sacrificed her own health and the expensive prescription she’d been recommended to enable me to go to Italy? She insisted she didn’t, but I wondered. And I knew she would do it again, if she could.

Just as I would.

I continued to spend all my days at the hospital, but less from a sense of frantic duty, and more from a place of peace. I was enjoying the time with my daughter, as simple as that. One afternoon, I came across the woman I’d seen months ago, in the little kitchenette, making tea. She gave me the same uncertain smile; she looked exhausted.

“Hi,” I said. “Tough day?”

She grimaced. “Every day is tough, but yes. This one was bad.” Her lips trembled for a second before she pressed them together. “It’s all going to happen a lot faster than we thought, it seems. Than we hoped.”

“I’m sorry.” I put my hand on her shoulder, fleetingly, just to let her know I understand, because God knows, I do. She smiles at me and nods, blinking back tears, and we make our tea in silence. It’s more than I did before; it’s enough.

Now it is September, a beautiful time in Boston, the leaves just starting to turn, everything bright and fresh and filled with promise. Children going back to school, yellow buses trundling along, people walking with a spring in their step. September has always seemed a much better time to me for new year’s resolutions than icy, dark January.

And it is on a beautiful, bright day in September when Dr. Brown tells me Emily is dying. She’s been dying for a while, but now it is really, finally happening, the absolute end. It is no longer a distant day, something ambiguous to skirt around, to wonder when or if. Her body is beginning to shut down—her heart pumping slower, her breathing labored, her kidneys starting to fail. Everything closing up shop and creeping away.

He tells me quietly, kindly, his eyes full of sadness, and I am not surprised by what he says. I am glad, in fact, that I have never had to make the agonising decision to withdraw life support, to actively end Emily’s life, a severing rather than a seeping away. That decision was made for me, and it is happening now.

“How… how long will it be?” I ask him. I am in his office, as I’ve been so many times before, with James next to me, his face stony, his eyes agonized. Dr. Brown asked to talk to us both this morning, and from his tone I knew what was coming. James did too, but even in the absolute expectedness of it, there is an element of disbelief.

“At this stage?” Dr. Brown steeples his fingers together. “I’d say no more than twenty-four hours, perhaps forty-eight.”

As quickly as that. Despite all the preparation I’ve had for this moment, that named figure shocks me. In forty-eight hours, maybe much less, my daughter will be dead. The concept feels too big for me, like quantum physics or calculus. I simply cannot get my head around it, even though I am not surprised.

“How… how does it happen?” James asks. “I mean… you know, the… the actual logistics.” His voice is scratchy and hoarse, his fingers plucking at his sleeve. Neither of us know how to be. What are the logistics of death? It feels so strange to need a schedule, to be told what to do, to have some rules to follow.

Dr. Brown takes us all through it, how they’ll turn off Emily’s monitors, to give us both privacy and peace. All the staff will be alerted to our situation. This is the palliative care unit, after all. They have a protocol, and they enact it seamlessly, because that is their job and they are very good at it.

I’ve seen it from a distance, when people go in and out of a dimly-lit rooms, closing the door so quietly, and nurses tiptoe past, a look of compassionate concern on their faces. You just know. Even if no one tells you, it’s obvious. And now it is our turn.

And so we head back to Emily’s room, everything feeling stilted, as if things don’t fit. I feel clumsy as I walk, even though I know I must look normal from the outside. Or maybe I don’t. Actually, I realize, I have no idea what I look like, what I feel like, anything. I am existing somewhere outside my body, even as I feel entirely present in the moment, aware of every breath I draw, the coolness on my skin, the creak of a nurse’s chair across the hall.

“We should call people,” James says after a moment. We are both standing in the middle of Emily’s room as if we don’t know where we are. “Your mom… my dad…”

“Now?” I resist the notion of expending my emotional energy on relatives, explanations. It would be so much easier to call after. At least, I think it would. The truth is, I don’t know how anything will feel.

James turns to look at me. “We don’t have to wait for my father,” he says slowly. His dad has come to see Emily only three times since she’s been sick, and he’s been increasingly uncomfortable each time, not even wanting to look at her, much less touch her or talk to her. “But your mom… wouldn’t she want to say goodbye?”