A Hope for Emily

“I mean with us,” James said on a sigh. “Are you happy with us?”

I shook my head. “James, I can’t even think about us, with Emily the way she is. I’m amazed you can.” I sounded accusing; I couldn’t help it. This felt so absurd. Quality time could come later, surely. Our sex life could take a hit.

He took a deep breath. “Emily has been sick for over a year, Rachel—”

“I know—”

“And the way things are going… I don’t think she’s going to get better.”

His words felt like an assault, worse than a slap. Physical violence, as if he’d taken my body between his hands and broken it. In all the time since we’d first gone to the paediatrician with our fledgling, hesitant concerns, he’d never said that.

Neither of us had ever voiced it, not to each other, not to anyone, because to do so was to give in, to give up. We’d held fast to the latest research, Greg Brown’s list of credentials, the cases where children were cured, healed, or at least the symptoms helped, the degeneration arrested. And yet here he was, saying the opposite. Admitting defeat. I couldn’t stand it. “You don’t know that.” I forced the words out through stiff lips.

James shook his head, a slow, determined back and forth. “Her condition has only deteriorated since this whole thing started—”

“Because they don’t know what her condition is, and so they can’t treat it.” My voice was spiralling higher and higher, a screeching yelp of fury and fear. How dare he give up already? How dare he think I would?

“They’ve tried, Rachel. They’ve tried over and over again. Antibiotics, anti-seizure medications, more MRIs than anyone should have in their lifetime, never mind in a year—”

“What is your point?”

James deflated, shoulders slumping, head lowered. I had no sympathy for him. He found this hard? I’d been at the hospital all day, every day. I’d been the one to hold Emily’s hand as she went into the MRI, to wait on endless hard plastic chairs for results that never came. I’d brushed her wispy hair from her forehead as her eyes pooled with tears and she looked at me in helpless confusion; she was losing the ability to speak, but I knew what she wanted to say.

Why is this happening to me?

James had been there for some of it, I could grant him that. A lot of it, even. He’d come to every big appointment, visited after work almost every evening, spent most weekends by her bedside. He’d been good that way, but he didn’t understand the relentless, day in and day out existence I’d been living. He couldn’t. And yet he still wanted out of it all.

“I know you’ve been taking the brunt of it,” he said slowly, his head still lowered. “Of Emily’s care. I know I come out looking like the big jerk in this scenario, Rachel. Of course I know that.”

“Yet you’re still going to do it anyway.” Leave me. The words echoed through me like an empty wind.

He looked up, his eyes bloodshot, tear-filled. Pity stirred, even though I didn’t want it to. This hurt him, too. I couldn’t pretend it didn’t, that it hadn’t been hurting him all along. “I’m sorry,” he said. “I just… can’t.”

“Can’t what?”

“Can’t live like this anymore. And I don’t think you can, either.”

Desperation made me scrabble for something. “James, do we really have a choice? I mean, I understand that you’re unhappy, and I’m sorry. I’m unhappy, too. I want better for our family, for our marriage. But with Emily…”

“I’m not talking about Emily. I know you don’t think we can even think about us, Rachel, but we’re still married, we still have lives.” I opened my mouth but he overrode me. “I’m not trying to be cruel or selfish, but not everything is about Emily.” I shut my mouth with a snap. I didn’t know how to answer that, because to me everything was about Emily. “We’re not happy together,” James stated more quietly. “We’ve barely spoken in months.”

“On Cape Cod—” That golden week, now over six months ago.

“Even then it was all about Emily, and that was fine. I enjoyed spending time with her. I’ll cherish that week forever. But…” His voice wavered and broke. “I can’t keep going on like this, Rachel. We’re living like strangers, semi-hostile strangers, even. I feel like you resent me for taking up even a second of your time.”

I rolled my eyes. I couldn’t help it. “Are you seriously going to tell me that you’re not getting enough attention?”

“No, because I’m not a dog you have to pet or a goldfish you have to feed.” He spoke with cold dignity, his emotion hardening into something scarier and far more final. “I don’t want your attention, Rachel. I don’t need my ego stroked.”

I was silent for a moment, absorbing everything he’d said, despite my instinct to reject it. “I don’t resent you,” I said, but the words sounded hollow. . The truth was, I did, and I didn’t even know why. For being healthy? For not seeming to care as intensely as I did? I wasn’t even sure, but I knew it wasn’t fair.

“I think we’d both be happier if we took some time apart,” James said quietly.”

“You really think that would help Emily?” I burst out. “Because if you cared—”

“It’s not a competition.” The words burst out of him, as if he had wanted to hold them in but couldn’t anymore. “Of co

urse I care, Rachel. Why do you always act as if you doubt that? We’re not competing for who loves or knows our daughter best, or who cares the most about what’s happening to her, or who feels the saddest or most hurt.”