A Hope for Emily Read online

  A Hope for Emily

  An absolutely heartbreaking and gripping emotional page turner

  Kate Hewitt

  Books by Kate Hewitt

  A Mother’s Goodbye

  The Secrets We Keep

  Not My Daughter

  No Time to Say Goodbye

  A Hope For Emily

  This Fragile Life

  When He Fell

  Rainy Day Sisters

  Now and Then Friends

  A Mother like Mine

  * * *

  Writing as Katharine Swartz:

  The Vicar's Wife

  The Lost Garden

  The Second Bride

  The Other Side of The Bridge

  Contents

  Prologue

  1. Rachel

  2. Eva

  3. Rachel

  *

  4. Eva

  5. Rachel

  6. Eva

  7. Rachel

  *

  8. Eva

  9. Rachel

  10. Eva

  *

  11. Rachel

  12. Eva

  13. Rachel

  14. Eva

  15. Rachel

  16. Eva

  17. Rachel

  18. Eva

  19. Rachel

  20. Eva

  *

  21. Rachel

  22. Eva

  23. Rachel

  24. Eva

  25. Rachel

  *

  26. Eva

  27. Rachel

  Hear More from Kate

  About the Author

  Books by Kate Hewitt

  A Mother’s Goodbye

  The Secrets We Keep

  Not My Daughter

  No Time to Say Goodbye

  Acknowledgments

  Dedicated to Mindy

  I know we haven’t been in touch in a long time, but I think about you often. Love, K.

  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?

  Suddenly I am furious; the rage courses through me, a cleansing river. No. I will not allow this to happen. Emily is five years old. She has her whole life in front of her. She must. I clench my fists, open my mouth, but Greg gets there before me.

  “Rachel, I really am sorry to have to tell you this.” He smiles at me, sorrowfully, and I believe he is sorry, of course he is, but it isn’t enough. He places his hands palm down, flat on his desk, next to Emily’s file. “I know it is particularly difficult in cases like these, where there are so few answers.”

  “There are no answers.” I sound fierce, bitter, and I try to rein myself in. There’s no point antagonizing the one person who has the power over my daughter’s care. Her life.

  “I know that’s been very frustrating for you.”

  Frustrating? He makes it sound like a paper jam in a printer, a bit of morning traffic. I know he doesn’t mean it that way, Dr. Brown has been great, with has being the operative word, it seems. Past tense. Looking at his slumped shoulders and tired eyes, he is a far cry from the neurology expert with the firm handshake and purposeful stride who assured James and me that he was going to get to the bottom of this, two and a half years ago.

  He was going to figure out why Emily was slurring her speech. Getting migraines, at only three years old. And later, when she started to stumble, and had seizures, and began to lose her vision, yes, he was going to get to the bottom of all of that, too.

  But he didn’t. He failed, and I don’t blame him for that. How can I? There were so many tests, so many attempts at diagnosis. Brain scans and blood work, MRIs and mental and physical assessments, on and on and on, the cycle of fear and hope followed by more uncertainty, tempered by a treacherous relief. At least it’s not that. Neuroblastoma. Moyamoya disease. Metachromatic leukodystrophy. There are so many terrible and rare conditions out there, and Emily doesn’t have any of them. But no one knows what she does have.

  Dr. Brown has done his best for Emily, I know that, and I don’t blame him for not being able to diagnose her condition, whatever it is. But I can blame him for being ready to stop trying. For giving my daughter up as a lost cause, when she has so much to fight for. To live for.

  “Sometimes this happens,” Greg says. He’s said it before, but not in quite so final a tone. “Boston Children’s Hospital is one of the leading treatment and research centers for neurological conditions in the entire world. We have more resources and research at our disposal than just about anywhere else.” He spreads his hands out, a gesture of sorrowful defeat. “But we haven’t been able to diagnose Emily past SWAN, as you know.”

  Of course I know. SWAN, Syndrome Without A Name. The non-answer, the endless question that constantly torments me even as it offers that treacherous sliver of hope. It’s impossible to explain the bizarre mixture of hope and fear you have, when there is no diagnosis. When there is no diagnosis, it could still be some weird virus, an infection no one caught that can be quickly cured. When there is no diagnosis, it could be the newly discovered fatal disease that only one in five million children get, and your child is the one that has it. And so I veer wildly from one to the other, one moment sure that Emily will wake up one day and smile at me—she has to—and the next half-expecting this to be her last. It’s overwhelming and exhausting, like living with an intense adrenalin rush and a body shot of Novocain all at the same time.

  I take a deep breath. “But why stop trying to find out, since you don’t know?”

  “Rachel, Emily has been in a state of unresponsive wakefulness for four months, with no visible improvement.” He shakes his head sadly. “As you know, from her recent MRI, her brain activity has been seen to be minimal for some time.”

  “Forty percent is not minimal,” I flash back before I can stop myself. He sighs, a sound I hate. “So what are you saying?” My voice trembles. “It’s not worth trying to find out what she does have?”

  “I’m saying I no longer believe Emily is a viable candidate for continued testing,” he says steadily. “I’m not giving up on her, Rachel, although I can understand why you think I am. If a new drug that I think would help Emily became available, I would put her forward for a clinical trial.”

  “But you don’t think that’s likely.” I sound bitter.

  “No,” he agrees heavily. “I’m sorry, but I don’t.”

  I can’t believe it’s going to end like this, after years of searching for answers, desperate for a diagnosis. I held onto hope, for all that time. “Dr. Brown, please don’t do this.” My voice catches; I am begging. “Emily is only five.”

  “I know.” He looks emotional, swallowing hard, but I am not moved. Not now. He might feel badly; he might go home tonight, raking a hand through his hair as he reaches for a beer. I had to let a patient go. It was tough. He can’t feel it the way I do, with every fiber of my being, every last wrung-out corner of my heart. Of course he can’t. I wouldn’t expect him to, and yet I want—I need—more than this.

  “I and the rest of the team have done our absolute best by Emily,” he insists, a throb of feeling audible in his voice. “I promise you that. But her condition has only worsened since she first came here, and her consistent lack of progress suggests an irreversible decline in her mental and physical capabilities. The team agrees that the best thing for her now is to be referred to the pediatric palliative care unit.”

  He takes a glossy brochure and pushes it across the desk towards me, but I jerk away, as if it is covered in spikes, hissing like a snake, “I don’t want a brochure.”

  “I know you don’t,” he says quietly.

  We wait, the silence heavy and oppressive. Dr. Brown’s hands are back flat on the table. I can’t think of him as Greg anymore now. I won’t. I take a deep breath, and it shudders through me. He registers the sound, the grief in it, and simply waits.

  He must have had a thousand moments like this one. Pediatric neurology is not a happy field. Not a lot of positive outcomes on this ward. But this? Palliative care?

  That’s for old people, surely. People with terminal cancer, people who have already lived their lives. Not Emily, who has hair like blonde cotton candy, who is only three and a half feet tall, who is five. Five. This is not right. I can’t let this happen.

  But I don’t think I am being given a choice.

  After another few seconds of silence I finally take the brochure. I flick through it, my mouth twisting cynically. Massage rooms and music therapy. Caring doctors with white coats and sympathetic smiles. Lots of couched language—family-centered, offering relief, based on need not prognosis. I hate it all. I put the brochure back down on the table.

  “Surely there’s something more you can do.” There has to be. Because I know as soon as Emily leaves this ward, this place where things happens and tests are done and results are still a possibility, no matter how slight, her life might as well be over. Instead of medicine, I’ll need a miracle.

  But maybe I needed that all along. Maybe Emily did. I can’t bear the thought.

  “I’m truly sorry,” Dr. Brown says. “Really. I wish…” He stops, shaking his head. This is not the time for wishes.

  “Is there really nothing else you can do?” I am caught between despondency and rage. “No tests… no scans…” I am grasping at flimsy straws, I know that. I see it in his face.

  “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.