A Hope for Emily

“You know, with your… female parts.” She gestures towards my pelvis just in case I didn’t understand. “It’s just, you’re not getting any younger, and I know you’ve said you want children one day…”

Had I let that slip once, when I was feeling hopeful, my period three days late? She sounds so wistful, yearning just as I am, and yet I can’t make myself commiserate with her. “James and I haven’t even been married a year, Mom. Give us a little time, okay?”

“But you’re thirty-six…”

“I know.” I dump some potato salad into a glass bowl; it comes out in a congealed, rectangular lump. “Trust me, I know.”

My mother gives me a look that is half sympathy, half exasperation, and touches my hand. It’s as far as either of us will go towards admitting that this isn’t simple. But of course, my mother has no idea how complicated it really is.

5

Rachel

On Monday morning, James and I meet at the doors to the children’s palliative care unit. It’s a much quieter place than the neurology ward—no doctors striding purposefully down the corridors, no squeak of wheels as monitors or ultrasound machines are moved importantly from place to place, no persistent beep of some essential machine or other.

The atmosphere is hushed, expectant… or am I just imagining that, because of what I know happens here? The parents going in and out look quiet and tired, but accepting too, in a way that makes me both prickle and ache. I don’t want to be like them. I won’t, not yet. I still want to fight.

James touches my shoulder as he greets me, a look of concern on his face that annoys me. We haven’t spoken since our meeting at Starbucks; we arranged today by text. He’s probably wondering if I am going to be able to hold it together. I’m determined that I will.

“How are you doing, Rachel?” he asks, all sympathy, and I shrug a reply. I want to tell him we should be feeling the same in this situation, that we’re both deserving of his thoughtful compassion, but I don’t, because I know it would be petty. Besides, I’ve already decided I’m going to fight for Emily, not against James. I just don’t know what that will look like yet, but I will.

Dr. Brown meets us in the waiting room a few minutes later, his expression serious but friendly. “Emily seems comfortable in her room,” he tells us. “She was moved about half an hour ago, and it went very smoothly, I’m happy to say.”

We both nod our acceptances, and James murmurs some sort of thanks. I can’t quite manage that yet; there is

a burning in my chest that is threatening to work its way up my throat and I am trying not to let it.

I know how difficult it can be to move someone in Emily’s state just from one bed to another, with all the potential complications, risks of infection, and laborious transferring of equipment; moving buildings would be a challenge, indeed, and one we were requested not to be present for, in case it didn’t go well. What that would have looked like, I can’t bear to imagine.

Dr. Brown touches my shoulder lightly, just as James did. “Would you like to see her new room?”

I nod jerkily and follow him down the corridor; the lighting has been dimmed and everyone talks in murmured voices. It should feel soothing, but it doesn’t. Dr. Brown had offered a tour before they moved Emily, but I’d declined, a matter of principle that now feels a bit petty.

There are coloured, cut-out handprints on the walls, with different names written on them. I peek in a room where the door is ajar and see a wall with a colourful Noah’s Ark mural and an empty crib. I look away quickly.

“Here we are.” Dr. Brown pushes open the door to Emily’s room. My heart squeezes with impossible amounts of both love and fear as I see her lying in her bed, her small body barely making a bump under the sheet. Dr. Brown has told me before how her growth has been affected by her condition; although she’s now two months shy of her sixth birthday, she’s only a little bit bigger than she was when she was three, when all of this started. It feels like a lifetime ago. Perhaps it was.

“Hey, sweetie.” I pitch my voice cheerful and firm, as I always try to do, normalizing what is entirely and horrifically abnormal—a tiny girl lying in a bed, eyes open, body still, and nobody knows why. She seems lifeless, yet with her eyes blinking, heart beating away, her lungs taking in breath after breath after breath. Three months like this, and it never feels less strange.

I touch her curls lying limply against her forehead; her hair feels brittle now, and it used to be so soft, curling about her apple cheeks, her rosebud mouth. James used to joke how he could eat her up.

When I’m at the hospital, I try to do as much for Emily as I can—giving sponge baths, brushing her hair, trimming her nails. Once I cut the tip of her finger, and I let out a stifled cry as blood welled up, a bright crimson drop, but she didn’t flinch or react at all. That hurt worse than the fact that I’d cut her.

Today I’ve brought some nail polish and hair clips, a way to make this time special, although I know it will feel like a gross parody of the real thing, a mother and daughter girly time with giggles and hugs. I try not to think of it that way, try, with desperate intensity, to focus on what I can—the sparkly bow I’ll put in Emily’s hair, the way her fingers sometimes seem to squeeze mine. It’s so little, and yet it has to be enough. Yet even as I brush and polish and chat, I know part of me will resists everything I am doing, and another part of me will revel in it, because at least she is here, breathing, beside me.

I leave the bag of clips and polish on the table next to her, for later, and instead flit about the room, adjusting the blinds, smoothing her coverlet, patting her hand. Dr. Brown is talking to James in a low voice; I hear assurances about regular consultants coming in, a tour of the unit, good communication, keeping her on lists for experimental drugs and clinical trials. He’s told me all of it already, all the promises that nothing is going to change while we all know that everything is. Emily will be out of his sight, an afterthought, perhaps, at the end of a long working day. I wonder what happened to… or, if we’re lucky, maybe I should check on…

And yet, even though I am corroded inside with bitterness, I know I can’t fault him. I can’t fault anyone, from the nurses who have always been so gentle and kind, to the medical team who are purposeful and efficient, to the support staff—the aides and cleaners and caterers who give me sympathetic smiles as they quietly move about, doing their jobs with the minimum of invasion or fuss.

The standard of care has been amazing, and if I had to fill out a survey, I’d give everyone five stars. But that doesn’t change the fact that my little girl is lying in bed, staring at the ceiling, and I haven’t heard her speak in nearly a year. It doesn’t change the fact that I will do anything, anything, to help her.

A round-faced, smiling nurse with a warm, rich Caribbean accent, comes in and introduces herself as Alma, and assures me she’ll answer any of my questions, get me anything I need. Dr. Brown invites us to take the tour of the ward, even though I am reluctant to leave Emily.

Dutifully James and I follow Alma around the unit, listening to her chat about life on the unit. She is cheerful without being annoying, laying a hand on my arm on occasion, giving me a smile that tells me she knows what I am feeling, the prickliness that comes out on me like a rash. I can’t let myself like anything, not even Alma, even though she is the kind of person you want to hug.

The unit is formed as a square with four corridors, and a nurse’s station in the middle. I see the massage and music rooms that were bigged up in the brochure, and a little kitchenette at the end of one corridor where I can make coffee or tea if needed. There’s a lovely playroom for the children who are well enough to play, although it’s empty when we poke our heads in, some blocks forgotten on the floor.

I take in the sofas, the toy kitchen, the colourful bins of plastic figures and puzzles, and swallow down the howl of resentment that wells up inside me, because Emily won’t ever use this room, unless they find a diagnosis. And a cure.