A Hope for Emily

“The entire team is in agreement about this decision, Rachel, and it is not one we’ve made lightly, I assure you.”

I know it can’t have been, but does that make it any easier? I glance down at the brochure again. It looks like a nice place, but also an awful one. A place where people go to die. “Dr. B

rown…” I look up at him, seeing his compassionate gaze, his hands folded in front of him. I swallow. I don’t want to ask this. I don’t want to know. “What, in your opinion, is Emily’s prognosis? I mean… how long will she be in this…” State of unresponsive wakefulness. That’s the current, politically correct term; the old one is a ‘persistent vegetative state’, which I hate. It makes my daughter sound like a thing, a zucchini stuck in a bed, and some of the medical team still use it. Dr. Brown makes sure not to, but I don’t really like any of the words the use, the clinical way they say them, even though I know they have to be that way. “I mean, I know you don’t think she’ll get better.” The words are jagged splinters sticking in my throat.

Ever since Emily slipped into a coma first, and then deeper still into the state she’s now in, I’ve been trying to be realistic. I’ve known she’s not going to open her eyes one day, smile sleepily, and say ‘hi, Mommy.’ I know that, and yet right now I realize I can tell myself I’m being realistic and still fool myself.

I have told myself all along that I was prepared for setbacks, for permanent damage, for Emily to never speak or even move again. I was, and yet right now I know I wasn’t. Because all along I’ve been hoping for the sudden diagnosis, the miracle cure, or at least some treatment. Something to make things just a little bit better, instead of this downward spiral towards… I can’t bear to think it. I won’t. Not yet.

“Emily could be in her current state for years,” Dr. Brown says quietly. “Although the average life expectancy of someone in her condition is usually under five years.” He pauses. “Unless you decided her quality of life did not merit continuing with life sustaining measures.”

It takes me a moment to realize what he’s saying. “You mean… kill her?” I can barely get the words out. Did a doctor really say that?

“No, not that,” he answers swiftly. I wonder if he’s thinking about lawsuits; it’s so important to use the right words. “When parents or relatives decide the quality of life is not worth continuing with life sustaining measures, they can agree to withdraw the gastric feeding tube, for example, from the patient in question.”

“Starve her.” I am disbelieving, icy.

“She would be made entirely comfortable. Obviously, that’s not something you need to consider right now.”

But I will have to one day? One day he’ll encourage me to make that decision? My stomach churns and I rise from my seat. “I’ll need to discuss all this with James.” He should have been here, but he had a work meeting and didn’t realize how important it was. Neither did I. “When we’ve had a conversation, we’ll be in touch.”

“I am sorry, Rachel,” Dr. Brown says yet again. How many times has he uttered those useless words? “Do talk to Emily’s dad, and then get back to me. We’re hoping to move Emily to the palliative unit next week, as long as her condition remains stable.”

I nod tersely, unwilling to verbalize my acceptance of that plan. I could still fight it. There has to be some way I could fight, some legal avenue James and I could go down.

I walk stiffly from the room, down the corridor to the ward where Emily has been for the last eight months, since a chest infection meant another hospitalization. She was only supposed to be in for a few weeks, until her condition stabilized, but even after she recovered from the infection, her condition continued to spiral downwards, until she slipped so deeply into a sleep, she has never seemed to wake up.

Sometimes I torment myself with my lack of memory of the last time Emily spoke. The last time she smiled or reached for my hand. If I’d known it was the last time, would I have remembered? Would I have held onto it? I’m sure I would have, but as it is, I can’t remember any of it at all.

It all happened so gradually, an erosion of ability, of possibility, that I was desperate not to acknowledge. When she first started slurring words at only three years old—well, she was young, and children developed at different stages. Then she started stumbling, and having terrible joint pain as well as migraines. For that whole year, Emily was in and out of preschool, going for tests, scans, therapies. For that whole year, I held on to the hope that this could be solved.

Then, just after her fourth birthday, when we took her to Cape Cod for a week of sun-soaked days on the beach, she had her first grand mal seizure. I think I knew then that we’d entered new territory, an unknown shore, and there was no going back.

A nurse looks up from her station and smiles at me, the curve of her lips fleeting and sympathetic. An aide is pushing a trolley slowly down the hallway; I hear its wheel squeak, and from another room I hear a mother’s murmured voice, the ensuing silence. This is a ward of children who are in similar states to Emily, children with neurological conditions, diagnosed or not, that are serious, untreatable, and in many cases terminal.

Children in comas, temporary or not; children with brain damage of varying degrees; children, like Emily, who have moved from a coma into a state of unresponsive wakefulness, the more hopeless scenario, as I have come to discover, because it signifies, as Dr. Brown pointed out, minimal brain activity. The scenario where you wonder if they’re awake, because they’re breathing, chest rising, eyes opening and closing, and when you squeeze their hands, sometimes they squeeze back. It’s not very much to pin your hopes on, but you do. Of course you do. You pin them all.

Although the truth is, I don’t know the conditions of the other children on this ward anymore. I stopped chatting to the other parents awhile back, because I just couldn’t. I don’t think they could either. We all have enough sorrow in our lives already; we don’t need the burden of bearing someone else’s, not even for a five-minute conversation.

Now I breathe in deeply the smell I’ve become so used to—antiseptic and stale at the same time. I know this place—the bright lights, the murmured voices, the heavy doors, the sunlight that streams through the window and yet feels so far away, the view of the parking lot, the people moving below, some with balloons, others with wheelchairs, everyone living out their hopes and griefs on a silent, sober stage.

Now, as I come into the room, she lies in bed, her eyes closed, her breathing regular. Sometimes her eyes are open, and it almost feels as if she can see me. Her gaze will track to the door and back, almost as if she’s trying to tell me something. What if she is?

She has been able to breathe on her own since she recovered from the chest infection, and besides the monitor registering her heartbeat and the feeding tube, she looks normal, a word I’ve started to hate. What is normal? Who gets to decide that?

“Hello, my darling girl.” I keep my voice cheerful even though sometimes it feels like the hardest thing I’ve ever done. I move around the room, touching her shoulder, adjusting the blinds, twitching a bedsheet. Anything to feel busy and useful, to lend a bizarre sort of normalcy to this situation.

Looking at her now, if you didn’t know any better, you’d think she was just sleeping. You’d think she’d wake up any minute, blinking sleepily like I try so hard not to imagine, smile at me and mumble something. Hello, Mommy. Or even I’m thirsty. Or maybe where am I? I’m not picky about what she might say. I’m not picky at all.

But that hasn’t happened, and it’s hard to hold onto the hope that it might, even as I guard against wanting something impossible. Sometimes I think I’m not being fair to Emily, to keep my expectations low. Shouldn’t we want the absolute best for our children? Shouldn’t we do everything we can to give it to them?

Isn’t that what being a parent, a mother, is all about?

Or is it about this, sitting quietly next to a girl who might never truly wake up, and talking about all the things she might miss, but just can’t tell us so? The most recent studies have shown that patients in this state might actually be more conscious than we realize, something that is both wonderful and terrifying.

Might, James said, with such awful emphasis. You can’t trust these studies, Rachel. You can’t pin all your hopes on them, on one research experiment that tells you what you want to hear, when there are so many others with different results.

But then what can you trust? Where do you find hope?