A Hope for Emily

3

Rachel

I blink in the dim gloom of the ubiquitous Starbucks where James asked if we could meet. It isn’t the kind of place I’d choose for our conversation, but it is near his work, a boxy office building on the outskirts of Brookline. It’s the busiest time of the month for his work, and he said he could only do his lunch hour, which stung. This is our daughter we’re talking about.

I take a deep breath and scan the tables, full of moms with toddlers or women decked out in exercise gear, as well as twentysomethings setting up their mobile workstations, with their laptops and latest iPhones and large lattes. The air is full of the rise and fall of murmured voices, the hiss of the espresso machine, the clatter of cups.

Finally I see James at a table in the back corner, and I start towards him, managing a nod if not a smile. I feel brittle.

He half-rises from the table as I come forward. “Let me get you a coffee.”

“I’ll get it.” I force a smile to bely the sharpness of my tone. “I’m already up.” I turn back to the line at the counter that is snaking towards the door, businesspeople checking their watches, bored college students scrolling through their phones, their thumbs moving so fast I doubt they’re even registering what’s on those essential screens.

I join the line, needing a moment to gather my composure, assemble the front I always put on when I’m with James. Just as with Dr. Brown, I try to be the good guy in this scenario. I’m the friendly ex, the one who understands, who is trying to make things work, who accepts James’ choices even though, in truth, a hard knot of bitterness and hurt has taken up residence in my gut and hasn’t shifted or lessened in the sixteen months since James told me, quite simply, that he ‘couldn’t do this anymore’.

I’d just come in from another endless day at the hospital, where Emily was being monitored after her fifth grand mal, or tonic-clonic, seizure, a terrifying experience that had left my hands clenched at my sides and my mouth open in a silent scream. Still no answers, just more blessed dead-ends. She didn’t have a neuroblastoma, thank God. It wasn’t epilepsy. But as relieved I was to know those things, I still wanted answers.

She’d been exhibiting symptoms for a little over a year at that point, and had been seriously ill for nearly six months. She couldn’t talk or walk very well, and had sudden, violent mood swings and bouts of anti-social behavior. I felt as if I didn’t know who my little girl was anymore, but I was still trying to get her back.

I dropped onto the sofa, my whole body wilting, as I nodded my weary agreement. “I know, James. I don’t feel like I can do it anymore, either.”

After the first seizure, when Emily was about to go into her second year of preschool, we’d both agreed that I would be the one to take a leave of absence. As an actuary for a life insurance company, James earned three times as much as I did as a high school English teacher. Besides, I wanted to stay by Emily’s side; I needed to be there, and it soon became clear that James struggled to handle it.

Looking back, it’s hard to remember exactly how we felt, how worried we were, when Emily first started slurring words and stumbling. I remember thinking she was just clumsy, something that now shames me, although I tell myself it shouldn’t. James was dismissive; it was so much easier, so much more comforting, to think it was nothing, or something she’d grow out of.

But as the

weeks passed and she stumbled more, not less; when the headaches started, along with the joint pain and the inexplicable mood swings… it became harder to think it was just a phase or a virus, a three-year-old having an off day.

And then that first appointment with a neurologist—Dr. Stanger, I think, although we only saw her the one time, before we were referred up the chain. I remember how grave she seemed, how seriously she was taking it all, and that scared me more than any of Emily’s symptoms. It scared James as well, and then the doctors’ ignorance made him angry, and everything felt as if it were spiralling out of control—Emily’s condition, our emotions.

Going to doctors’ appointments and physical therapy sessions—back in the beginning, when these things seemed as if they could hold answers—started to feel like an escape. Perhaps that should have been my first clue that our marriage wasn’t as strong as I’d assumed it to be. That this was coming.

“I don’t mean it like that, Rachel,” James said after a heavy-laden pause. I was easing my sensible shoes off my aching feet, my head lowered, but I looked up when I registered his serious, final-sounding tone. “I mean us.”

I stared at him dumbly, barely able to process what he was saying. Us? I couldn’t remember when I’d last thought of us as a concept. How could I worry about making sure we a date night when our daughter had been sick for over a year and was only getting sicker? When every last iota of our emotional energy surely had to be focused on Emily and helping her to get well?

“Is this really the time for this sort of conversation?” I asked, striving to sound reasonable even though I felt like flying at him, fists raised, temper finally unleashed. Are you serious? Our daughter is ill. Seriously ill. And you’re going to complain that you’re not getting enough quality time or sex or something like that?

“I’m sorry, Rach. I really am. I know there’s no good time for this. I thought about not saying anything, just stumbling through, but… I don’t think that’s the right choice for either of us.”

I straightened, his words, and worse, his tone, filtering through me. He sounded so resigned, as if it was already over. We were. “What… what are you actually saying, James?” I asked, each word wooden as it came from my mouth. I felt stilted, everything in me off kilter, knocked off balance by this entirely unexpected—and unwanted—conversation.

All we’d done for over a year was think and talk about Emily. Evenings spent online, searching for the miracle needle in the endless haystack, the bit of research that would tell us what was wrong with her, when even a team of the world’s best neurologists didn’t know. Days spent sitting by her bedside or helping her to walk, talk, be—keeping her in preschool, trying to salvage some normality from the total disruption of our lives.

“I think… I think we need some time apart.”

Even though part of me had known he was heading there, that he had to be, it still came as a shock. It felt ridiculous, that he could say this now. That he could even think it.

“You’re leaving me?” My voice was faint with disbelief; I realized I couldn’t even summon the energy to feel angry. Emily was in hospital for the third time in three months; in the last six weeks she’d lost her ability to speak, her hearing and vision were becoming compromised, and her mobility was continually getting worse, and he wanted his own space? He thought that would help?

James scrubbed at his eyes with his fists; I saw how tired he looked, and more than that, how distraught, his lips trembling before he pressed them into a line. And yet, despite all that, he nodded. Resolute. “I suppose… I suppose I am. If you want to look at it that way. But I think it’s better for both of us.”

“How else am I supposed to look at it?” I was almost curious, the professor investigating a problem, too dazed to look at this from anything but a distance. How did he think he could spin this? What other explanation could there possibly be?

James dropped his fists and looked at me directly. “Tell me the truth, Rachel. Are you happy?”

I had a sudden, wild urge to laugh, but I didn’t. Of course I didn’t. “No, I’m not happy. Our daughter is in the hospital, having had another huge seizure, and the doctors still can’t find any answers as to why she is losing all her abilities and functions.” One by one, like dominoes falling, always falling. Nothing ever getting better. There were some days I thought I couldn’t stand it anymore, not without screaming or even exploding. My voice rose to a fraying thread, ready to snap, as I glared at him. “How do you think I feel?”