After the End(33)
“Bridget has enriched my life—and the lives of everyone who knows her—in a million and one ways,” she says. “But if I’d known how hard her own life would be, if I’d known that the moments of pleasure would be so few and so fleeting, amid the drugs and the seizures, and the operations . . .” Eileen straightens, her eyes refocusing on the room around us. “Well,” she says, her voice still soft, “I don’t know if I would have been so selfish.”
twelve
Leila
It has been five days since Leila asked Max and Pip Adams to make a decision no parent should ever have to face. She has checked in with them each day, answered their questions and made herself available whenever they have needed. She has not pushed them for a decision, but she knows that the time will come—and soon—when she will have to do so, and so she is relieved when Max Adams asks for a meeting.
“We’ve made a decision.” He is wearing a suit, and the formality is at odds with his wife’s shapeless jumper, stretched over restless fingers that scrunch the cuffs into balls.
Leila knows what it is without asking—she can see it in the fix of his jaw and the steeliness in his eyes—but she waits for Max to voice it.
“We’re not prepared to give up on our son.” He is holding his wife’s hand, and he rubs his thumb over her knuckles as if she needs this physical reassurance that he is there. “We’ve researched Dylan’s condition and we understand that he will have life-limiting disabilities, but we feel that if there is a chance of prolonging his life, we should pursue that option.”
Leila has rarely heard a parent speak so confidently and so fluently in the midst of tragedy. Max Adams doesn’t sound like a parent at all, she thinks. His speech is slick. Rehearsed. It is, she realizes, a pitch. Because that, she supposes, is the world that Max Adams knows. It does not mean that he isn’t falling apart on the inside. And in fact, when she looks a little closer, she sees that his tie is not quite straight; his shirt is a little crumpled. A muscle ticks at the side of his jaw. And behind the confident, self-assured eyes is pure fear.
“I understand.” Leila is not a mother, but her arms have held many infants. She has delivered babies, both kicking and still. She has lost children; seen the pain in parents’ eyes as part of them dies, too. Leila would not give up on her child, either.
“We want Dylan to have proton beam therapy.”
Leila has not expected such specifics, but she is not surprised. She imagined the Adamses would suggest another course of chemotherapy, but they are not the first parents to suggest proton beam therapy.
“The NHS has agreements with centers in the US,” Max says. A casual observer might find his tone abrasive. Condescending, even.
“So I understand.” Leila is not a casual observer. Leila knows that Max Adams is close to breaking point, as so many PICU parents are. He is fighting for control in a situation where he has none, and Leila will let him have it. “There are treatment centers planned for London and Manchester, but for now it isn’t something we can offer here.”
She notices that Pip has taken back her hand, wrapping her arms around herself. She is letting her husband take the lead, and Leila wonders if this, too, is contributing to the pain etched in Max’s face.
“But you can send patients to the States.”
“I’ll need to talk to the oncologist team about whether Dylan’s case is right for proton beam therapy.”
“It is.” Max is bullish, and Leila feels her spine straighten in response. His son is dying, she reminds herself. Leila has forgiven many parents many transgressions over the years. Spat-out insults, angry diatribes—even, once, a hard shove of the shoulder from a mother whose heart she had hewn in two with her words. I’m so sorry—we did everything we could.
“Now that I know you want to explore more treatment options—”
“We want to explore proton beam therapy.”
“—we can look at the most appropriate course of action.” Leila looks at Pip, still curled into her own embrace. She will need to document this conversation, and she would like to record both parents’ views. “Mrs. Adams, do you have anything you want to add?”
Pip Adams glances at her husband. She says a single word, but so quietly Leila has to lean forward to catch it.
“No.”
“OK, then,” Leila says, but there is something about the stricken look on Pip’s face that makes her stop, makes her question what she heard. “Do you mean,” she says quietly, keeping her eyes on Pip’s, “No, I don’t have anything to add?”
A single tear makes its way down Pip Adams’s cheek. She gives another nervous glance at her husband, then swallows. “I mean, no. I mean, I’ve changed my mind. I don’t want to put Dylan through any more treatment.”
Max Adams stares at her, openmouthed. “What?”
“I can’t do it.” Pip starts to cry, and Leila’s heart clenches.
“Can’t what?” Max says, his voice too loud for this room, for the people inside it. The color has drained from his face, and although he’s still seated, every muscle is tense, like he’s on a starting block. He looks at his wife and his voice cracks as he speaks again, more quietly, this time. “Can’t save Dylan’s life?”