A Hope for Emily

Prologue

I found out about you today. I held the stick between my fingers and stared at those blazing pink lines and felt amazed, joyful, and terrified all at once. I couldn’t believe it, so I took another test. Actually, I took three. And then I wondered how I should tell your father—hide the test in his bag? Write a card? Text? No, of course not text, but I really don’t know. What’s the best way to say a surprise? Right now you’re my secret, and I’m holding you close. I’m hugging you tight, because you’re mine.

* * *

I’m calling you ‘Bean’ because apparently you’re as big as that—or almost. A lima bean, the internet told me. A small one. I’m eight weeks pregnant now—I didn’t take a test before, even though my period was late, even though I sort of suspected, because the truth is, I was scared to know, to feel disappointed or overwhelmed or… something.

* * *

But I finally took the test—all three in the package actually—and I sat and stared at those lines and I knew, I knew it was the best thing that had ever happened to me. Even if it was scary. Even if I wasn’t sure I could handle it—pregnancy, birth, being a mother, the whole nine thousand yards. You’re my bean, and I already love you with everything I have, with a love that feels so huge and overwhelming and wonderful and scary, because it’s bigger than me. How can something I feel inside be bigger than me? I don’t know, but it is. It absolutely is. And I know that whatever happens, wherever this journey takes us, you’re my little bean, and you always will be.

* * *

Love, Mama

1

Rachel

You know the worst thing, that possibility you dread, the terrible what-if that keeps you up at night, heart racing, palms icy, the one thing you tell yourself will never happen, because it can’t, it just can’t, you wouldn’t survive it, you wouldn’t know how?

Well sometimes it does happen. And you do survive it, even if you can’t understand how your body is still functioning—heart thudding steadily, breaths in and out, even your stomach gurgling, I mean, how? How can my body feel hungry when a doctor, a doctor I’ve put all my trust and hope in for over two years, has given me the worst news that he possibly could?

No further tests. Those three words feel like a weapon wielded cruelly, a physical violence perpetrated against me, against my daughter. Emily. She is not quite six, and she has eyes like stars and a laugh that bubbles up from inside her and makes you smile in wonder, although I haven’t heard it in over a year. She likes rabbits and Peppa Pig and would stay on a swing for as long as she could, if I let her. At least, she used to like all those things. The truth is, I don’t know anymore.

I stare at the doctor as my mouth opens and closes. My body’s functions might all be ticking along nicely, but my thoughts are frozen, and I can’t think to speak, not even a syllable. Even though some part of me has known we are marching inexorably towards this moment, everything in me resists.

“But…” I finally manage, helplessly, the word leading nowhere. I shake my head. Words still fail me as my heart continues to beat, thud after relentless, uncaring thud.

“I’m sorry,” the doctor says. Greg Brown. I started calling him Greg a few months ago, even though it felt a little familiar. A bit weird. I still did it, because the truth is, I see more of Greg Brown, pediatric neurologist, than I do of anyone in my personal life, even my now-ex-husband, or my mother, who lives fifteen minutes’ drive from my house. Greg and I have history. Too much history.

“I really am sorry, Rachel,” he says, and I know he means it. The corners of his mouth are turned down, his eyes soft and sad, his curly gray hair thinning on top and looking messier than usual. His hands are knotted together in his lap. I wonder when he started calling me Rachel.

When Emily had her first grand mal seizure two years ago? When she lost the ability to talk at all, sometime in the last year? Or was it later, when she drifted into a coma just over four months ago, her body seeming to shut down, like someone turning the lights off in a house? One by one by one, and then, seemingly suddenly, everything is dark.

“But I don’t understand.” My voice wobbles and I take a deep breath, willing myself not to cry. Crying is weakness. It shouldn’t be, but the fact is nobody likes tears. People look away; they’re embarrassed, or they pretend you’re not crying, even when your shoulders are shaking and the sobs are audible. It seems a kindness to ignore it, but it isn’t. It’s cruelty, or perhaps just indifference. I don’t know which is worse.

I have wanted to cry many times over the last three years, and I have learned it’s better to save the tears for when I am alone in the shower, or bent over the sink, washing the dishes, or lying curled up like a question mark alone in bed. I needed to hide them, even from James, because just like everybody else, my husband grew tired of my tears. Or maybe he just grew tired of me.

“Emily’s care team has come to the conclusion that further treatment or testing would not be advisable at this stage.” The words sound rehearsed, but the tone is heartfelt. I know it’s been a long journey to this decision; I know Greg and his team have tried everything—every scan, every experimental drug, every possible therapy. Nothing has worked. Nothing has shifted the horrible non-diagnosis that Emily has always had. And yet still I resist, because not to is inconceivable.

“How could it not be advisable?” My voice rises, strident, worse than crying. I am turning into the angry parent, and in the three years since we began this terrible journey, I have tried so hard not to be that.

I’ve been the good mom, the one who always says thank you, who brings cookies and boxes of chocolates to the nurses, who remains upbeat even when I’ve felt like staggering or just lying down on the floor of Dr. Brown’s—Greg’s—office and curling up into a ball.

I’ve treated Greg like the leader of

an expeditionary force, a fearless explorer, braving this new and uncertain terrain. What can I do to help? How can I support you in this endeavor? I’ve been so good, and now this? He’s just walking away, along with all the other specialists and surgeons, nurses and neurologists, everyone who has been trying to figure out what is wrong with my daughter?

They just don’t care anymore?