Reflect is a short story, written by WCAS student Ashley Chen for a Northwestern Residential College Research Project, that explores the impact of genetic technologies on families.
Francesca bit her lower lip as her eyes scanned for the sight of the Children’s Hospital of Hope. It was a bland building of giant proportions—tan, built in the seventies with little consideration for aesthetics. But yet, she was perched on the edge of the passenger seat, as if the sight of it were the only thing that could ease her anxiety.
Finally, the concrete building of the hospital reared into view as they rounded a bend and pulled into the parking lot. “There! There’s one right there!” Francesca flung her arm out and pointed to a small spot between two black cars. Evan made a wild turn, making Jeff giggle in the back. Francesca turned to straighten him out in the car seat.
“Phew! Just made it in time!” Evan announced, as he threw the car in park and unbuckled his seatbelt.
“Two twenty-seven,” Francesca said absentmindedly as she extracted Jeff from the backseat. “Watch your head sweetie,” as she tucked Jeff’s head out from under the door.
“Mam-a! Mam-a!” He giggled as he clutched at her hair, surveying her through dark grey eyes.
Francesca had never been a fan of hospitals. Unlike Jeff, she had been a healthy child, so she’d only been to the doctor once or twice every year for her check-up. The smell—the too-sterile industrial odor that pervaded the atmosphere, mingling with the sickly sweet scent of decay, always made her slightly nauseous. But, after having been in and out of so many different hospitals and doctor’s offices, seeking answers for Jeff’s troublesome, mysterious symptoms multiple times a month over the past year, she had learned to steel herself against it.
Francesca hadn’t felt this jittery in weeks—not since the day they were to get Jeff’s genetic test results back. She remembered the rapid pulse of her heart, Evan’s warm hand squeezing hers, and Jeff’s soft, cool cheek pressed against her neck as they walked into the geneticist’s office. She also remembered a different touch, one that marked a turning point in the journey to find a cure for Jeff.
“Fanconi’s Anemia is not an easy thing to deal with,” Dr. Grant, the geneticist, had said gently, reaching across the table for Francesca’s hand.
“No shit it isn’t,” Francesca had thought, as she said nothing, striving to keep the hot tears from streaming down her face. Her hand had burned where Dr. Grant’s cool fingertips touched it. She’d wanted to slap that offending hand away, but also to grab it, cling to it, like a desperate man clinging blindly to a thin thread of hope.
Evan had just looked out the window, knee bouncing crazily as he leaned back in his chair, shaking his head, saying, “We knew it, we just knew it. Knew it all along,” Frustration and anger threatened to burst out of his voice, and Francesca knew how hard he was working to contain his emotion.
Fanconi’s Anemia. They had known about Fanconi’s ever since Jeff’s primary care doctor had mentioned it as a possible diagnosis—an inherited, rare, recessive disease. It was the first diagnosis that actually seemed to fit other than leukemia, which their doctors had suspected for a while and thankfully rejected. A genetic disease leading to bone marrow failure, Fanconi’s meant that eventually Jeff would stop producing the different types of blood cells needed to clot his cuts and scrapes, transport oxygen and fight infections.
He exhibited all of its classic symptoms— small, fragile stature; downward-turned thumbs; splotches of discolored skin; and most troublesomely, increasing listlessness, trouble breathing, and a blue tinge to his pale cheeks webbed with fine, red dots. He was smaller than his peers, seeming almost half their size as he lagged behind while they scurried about, innocently carefree in their robustness. It all fit.
That’s why they were referred to the Genetics Institute for genetic testing, and to Dr. Grant, who finally gave their weary ears some concrete, definitive information. Dr. Grant also firmly stressed that there should be no guilt from either Francesca or Evan in giving Jeff this disease. “This is not to be blamed on either of you,” she said, sternly eyeing Francesca, who was biting her lip to keep herself from tearing up.
Dr. Grant had referred them to the Children’s Hospital, where they would proceed with treatment options with a doctor who specialized in cases like theirs. She pulled out a card, sliding it across the table. “Dr. Shiva Singh,” it read.
“This is the doctor at the Children’s Hospital who will be taking care of you. He is wonderful and caring—we’ve worked closely with him and his unit for over a decade. I’m positive he can answer almost all the questions you have for him.” Dr. Grant had smiled at Francesca warmly, and Francesca forced herself to smile back.
The Children’s Hospital elevator dinged, mentally shaking Francesca from her reverie. They walked down the hallway to Dr. Singh’s waiting room, greeted by bright cards plastered all over the waiting room wall that screamed, “Thank you!” “Thank you so much!”
“Empty words,” Francesca thought bitterly, “until you can put emotion to them yourself.” She looked at the pictures of smiling kids with envy, their eyes shining with vitality, their cheeks faintly tinged with the slightest flush of pink. And smiles—smiles everywhere! They mocked her in their joy. Francesca busied herself with signing Jeff in, lest she upset the delicate balance of the nervous energy that was just barely holding her together.
Her restless eyes desperately scanned the minimally decorated waiting room for something to settle on, and a vase of pink roses resting on the counter caught her eye. Francesca leaned over to inhale their sweet scent before joining her husband on one of the waiting room’s vinyl-covered chairs, momentarily forgetting the tense worry that had long settled on her shoulders.
“Do you remember that I used to get you one every day when we were in college?” he nodded at the flowers.
“They were magnificent,” Francesca murmured, smiling. “That stopped when you became a heartless software engineer,” she teased.
Both of them chuckled as the nurse finally called out Jeff’s name. Francesca stood up swiftly, all anxiety returning. Gathering Jeff up, the family moved into Dr. Singh’s office.
With his bright eyes and tall, assured stature, Dr. Singh was filled with a youthful energy Francesca vaguely remembered possessing. He stood up from his desk and shook their hands with vigor.
He cleared his throat, shuffling through the manila folder branded with Jeff’s name. Pulling a document from the manila folder, he slid it in front of them. The genetic test results. Tears pricked at Francesca’s eyes, but she hurriedly wiped them away.
Dr. Singh was earnest and intense, his dark eyebrows knitting together as he showed them Jeff’s records, pointing out two genetic variants, or alleles, that coded for Fanconi’s Anemia, authoritatively verifying Jeff’s symptoms.
“Now I’d like to discuss your treatment options.” He pulled out another piece of paper and slid it over to them. “This has some more information on the treatments that I’ll discuss. If you have any questions, please don’t be afraid to interrupt and ask me.” At this, Francesca breathed a small sigh of relief. Finally, someone who would help them move forward.
Dr. Singh pressed his palms to the table, took a deep breath, and explained that, essentially, Jeff needed new bone marrow tissue in order to survive. He had several options—the first was something about a man-made hormone that would temporarily stimulate the production of blood cells. Jeff’s body would adjust to it over time, rendering the treatment less and less effective, leaving a cure wanting. Francesca instinctively started shaking her head – she had no interest in that.
Another option was to search the bone marrow registry and hope for a marrow donation match, Dr. Singh continued. This would provide a cure, because hopefully, the new marrow would eventually resume its normal function and replace all of Jeff’s blood cells, rendering him healthy at last. The registry also searched the umbilical-cord blood banks, so it would be possible that bone marrow could be re-grown from the stem cells inherent to the cord blood.
The transplant process wouldn’t be without risk, however. Jeff’s existing bone marrow and all his blood cells—his immune system—would first need to be obliterated by radiation in order to make room for the newly transplanted marrow. And, if the donated marrow wasn’t a perfect match, it could begin attacking Jeff’s body, a very serious outcome.
Francesca nodded, unsurprised, and she could see Evan doing the same. Through her countless hours of research on Fanconi’s, this was one of the treatments that came up repeatedly. She had read about it exhaustively, but her heart still beat faster in expectation as Dr. Singh continued.
Anticipating Francesca and Evan’s questions, Dr. Singh explained that yes, they would search for a match for Jeff on the registry right away, but it would be wise not to place too much hope in it—if no immediate match could be made, there was no guarantee when one would walk through the door. Francesca’s stomach began to knot, uneasiness growing as he continued.
“The last option would be to have another child - one that is a match for Jeff.” Evan nodded seriously, but calmly. Francesca’s breaths were coming short, as she fought the rising panic that was threatening to claw its way out of her throat.
She’d come across this while researching Fanconi’s but couldn’t bring herself to examine it closely. Something about it engaged a visceral reaction in her, an immediate repulsion. She unconsciously drew herself up and away from Dr. Singh, as if he had just tried to slap her across the face. Evan looked at her worriedly.
“It’s officially known as pre-implantation genetic diagnosis coupled with in-vitro fertilization,” Dr. Singh continued. Essentially, the umbilical cord blood of a baby contains a higher proportion of hematopoietic stem cells, which convert very easily to growing and healthy bone marrow cells. Those healthy bone marrow cells would then be transplanted into Jeff, who, if the transplant were a success, could live a very normal life.
The in-vitro fertilization process would be standard—harvesting and fertilizing eggs from Francesca’s over-stimulated ovaries. Pre-genetic diagnosis would follow—testing the resulting embryos to see if one was both a match for Jeff and Fanconi’s Anemia negative. If one were found, the embryo would be implanted, hopefully resulting in a normal pregnancy for Francesca.
Francesca said nothing, but she could feel Evan’s mood lifting, hope surging through his body again. Why didn’t she feel the same way? What was restraining her?
Would you really create a baby merely for the sake of a few milliliters of blood? a voice asked her. This child—wouldn’t he feel used, knowing that he had been born out of necessity, putting the value of Jeff’s life above his?
No, Francesca thought. I would love this child just as much as I love Jeff. The procedure is in no way going to harm him or her—
But Francesca—you nearly retched at the first thought of it. Why?
Just—shut—up, Francesca thought, teeth clenched.
Dr. Singh must have seen her face, because he said gently, “It is an enormous decision and commitment. There are many fiscal as well as physical and emotional issues to consider. Please discuss it more thoroughly at home, and meanwhile, I’ll initiate a search for a match for Jeff on the registry. All you need to do is fill out these forms here, and sign.”
He slid a small stack of papers toward them, and Francesca began filling in the spaces mechanically. The smell of roses came back to haunt her, their sweet phantom scent filling her nostrils as she bent over the paper, mocking her with the memories of happier times.
Francesca willed herself to stop pacing and sat down on one of the waiting room’s vinyl-covered chairs. Evan remained standing, and Jeff played with a pile of Legos on the floor. Hands in her lap, she stared distractedly at the nurse at the desk, who kept sneaking her cell phone from the drawer whenever she thought no one was looking. Hunched over, the nurse texted furiously on her Blackberry. She jumped as the desk phone rang loudly, thrusting her cell back into the drawer in one admirably smooth movement.
“Hello, you have reached Dr. Singh’s office in the Children’s Hospital, how may I help you?” Her voice was sweet and perfectly soothing.
Francesca looked away. Just yesterday morning she had jumped for the phone much less gracefully after being startled from sleep. She had contemplated not picking up, but the ringing was persistent. Groaning, she had lifted herself out of bed, throwing a clumsy hand on the phone.
“Hello, is this Mrs. Cohen?” The soothing, familiar voice of Dr. Singh filled in.
She yawned and rubbed her eyes, her brows drawing in a little. The day before, she had taken Jeff to a routine appointment with Dr. Singh like she had each Tuesday since their first meeting three weeks ago. But Jeff hadn’t been feeling as well lately; he seemed to be more listless than usual, and Francesca hadn’t know if it had been just a figment of her imagination, or had his skin become a little bluer…? He also seemed to be taking shorter and sharper breaths; Evan had noticed this too, remarking worriedly that Jeff needed to rest more often. Dr. Singh had scribbled dutiful notes on those symptoms, and then they conducted all the usual blood tests. Like he had said to her every week, the results of the tests would be in within two days.
But it hadn’t been two days— maybe they’re just operating a little faster than normal, she thought to herself.
“Yes, this is she. How are you, Dr. Singh?”
“Good, good.” There was a slight hesitation. “I have some news concerning Jeffrey. I’m a little worried.”
At this, Francesca’s spine had stiffened, and adrenaline rushed through her system, eliminating all vestiges of sleep. Her fingertips turned white as she clutched the phone tighter.
“As you know, we’ve been monitoring Jeff’s blood counts - red blood cells, white blood cells and his platelets - for a few weeks now,” Dr. Singh began. He went on to explain that for the past several weeks, Jeff’s blood count had been pretty normal—a couple of dips here, a couple of spikes there, but stable overall. On the whole, a little lower than he’d like it to be, but nothing dangerous. This week, however, Jeff’s red blood cells plummeted, followed closely by his white blood cell count. In fact, it was shockingly low, officially putting him in anemic range. From here, Jeff was sure to continue declining rapidly.
“The prognosis at this range is not good—I will call the registry today to see if there have been any matches found for Jeff, and then we must discuss the possibility for Jeff’s treatments immediately,” Dr. Singh had said, trying to maintain his balance between urgency and professionalism. “Could you come in tomorrow?”
Francesca had hung up the phone, shrinking back into bed, fighting off the inevitable tears.
And now here she was, the wait seeming interminable, growing more electric by the second with menacing unknowns and questions. Would she have to make her decision today? She closed her eyes, willing her stomach to stop rolling. For the last couple of weeks, Francesca had refused to think about having another child as a serious option, holding out hope for the registry. “It’s just….not right,” she would say when Evan asked her for the umpteenth time why. “I just don’t know Evan, I feel nauseous every time I think about it.” And Evan would shake his head, walking away before it could turn into a screaming match.
Finally, the nurse with the soothing voice called out Jeff’s name, and the family hurried into Dr. Singh’s office. He swept in a moment later, green eyes dark with worry.
“Got a flow-wer!” Jeff said, toddling over to proudly present a mass of Legos constructed in no intelligible form to Dr. Singh.
“Very cool! I like it!”
“For you!” Jeff said as he thrust it up at Dr. Singh, narrowly missing the entrance of his nostril.
“Me? No, I couldn’t! But why don’t you give it to Mommy instead?” Dr. Singh smiled.
“Ok!” Francesca smiled and laughed, pretending to smell it as Jeff toddled off to make more.
Dr. Singh lowered himself into his chair, and Francesca released a breath she didn’t know she was holding in. Dr. Singh hunched forward, his hands clasped together. “I’m glad you could make it in today. How are you two?”
“We're grateful you could make time for Jeff. Obviously, we just want to know what’s going on,” Evan said, his eyes intent on Dr. Singh.
“While Jeff is now very anemic, we still have time. Time for treatment.” His eyes slid to Francesca, who began studying her hands. “He needs to begin within the next two years, which I know sounds like a long time, but—“
“We know it’s not.” Francesca said firmly, but quietly.
There was an uncomfortable pause. The clinking of Lego crashing against Lego stopped as Jeff looked up, his eyes wide.
No, there was never enough time. Francesca had spent many a day sitting at the piano, playing a couple notes here, a couple of notes there, savoring the few hours in the early morning she got to herself. Cautiously, she would ease herself into thinking about having a baby to save Jeff. At first, she would shudder when thinking about it. But as she thought about it more and more often, the instinctive shudders were replaced by more concrete doubts.
At first, Evan had thought Francesca was so averse to the treatment because of their financial situation. True, all of Jeff’s treatments and doctor’s visit were expensive, and money was tight. Another child would be difficult, but Francesca didn’t care. She made it very clear that something as irrelevant, fleeting and superficial as money would never get in the way of saving Jeff’s life. It was more complicated than that. It was that they would be conceiving a baby for its umbilical cord blood. They would be using this child as a tool. And the thought of that just sickened Francesca.
Of course, of course, Francesca thought, she would love this child just as much as she loved Jeff. And using the umbilical cord blood wouldn’t hurt the baby at all. Personally, she would have been honored to cure her older brother.
But still, Francesca thought, no child of mine should be conceived as a tool.
Her hands were gripping the armrests of the office chair so tightly that her knuckles were white. Evan touched her hand, drawing her out from her wallowing thoughts, and Dr. Singh resumed his hunched-over position at the desk.
“I’m afraid you don’t really have much of an option at this point. I called the registry yesterday and pushed them for results, and they express mailed them to me this morning.” He slid a sheet of paper across the table. Underneath the official header of the National Bone Marrow Registry was a short, stark list of five ID numbers of potential donors.
Francesca’s heart pounded in her throat as she read them. On their first visit, Dr. Singh had explained that matches were made by testing at certain areas of DNA, or loci, on Jeff’s chromosomes. They would profile ten different loci and see if they matched any donors.
Preferably, all ten sites would match, which would lead to minimal risk of the marrow being rejected. Since Jeff was a child, it would be better if his bone marrow came from someone younger. The younger the donor, the more tolerant Jeff would be of mismatches at the loci, and an eight out of ten loci match would potentially be acceptable.
Now, the finger of Dr. Singh intruded upon her field of vision, tapping upon the first ID number. “They gave us our best five matches, in order of ranking. As you can see, the best donor available for Jeff is an adult, with an eight out of ten match. Unfortunately, it seems like Jeff has some rare alleles that statistically have been proven to not tolerate mismatches well.” Dr. Singh’s eyes were heavy, almost imploring.
“So….this means….” Evan grasped the arms of his chair tightly. Francesca thought about putting her hand on his, but decided against it.
“Professionally, I think it’s too much of a risk. A nine out of ten match is iffy, so the odds that an adult eight out of ten match will work—well, let’s just say the odds are not stacked in your favor.”
Francesca’s gut began to roll, churning with dread and anger.
“At this point, there is really only one option left, unless you want to monitor the registry and hope that a donor will come in within the next six months or so,” Dr. Singh said softly. “But a decision must be made soon,” he urged, his eyes gentle, fixed upon Francesca.
“We know,” Evan said, turning his less-gentle gaze in her direction.
The car was silent on the way home from the Children’s Hospital. Tense, almost unreadable silence. Evan must have known better than to break it, but she could tell he wanted to. There was anger, resentment, confusion, all boiling and bubbling and wanting to explode all over her. But then she looked up, surprised, as Evan slid a tentative, tender hand on hers.
“Babe,” he began. “I know we’ve discussed this before, but please. Please. Just consider what Dr. Singh said.”
Her jaw clenched, and she looked out the window. A sharp retort hovered on her tongue, but she swallowed it. “It’s not like I haven’t.”
“I’m not sure—there are just so many things to consider.”
Evan’s brows knit together. “Like…” he prompted.
Francesca shook her head as the trees zoomed by in blurs. She took a deep breath and forced herself to say the words. “I don’t feel like we’d be having this baby for the right reasons…”
His brows knit together further. “What do you mean, not having a baby for the right reasons? This kid would be saving Jeff’s life—isn’t that what we want?”
Francesca looked away. “Talk to me, Francesca.” Evan’s voice was forceful.
“I am not going to be talked at like a child,“ she responded icily.
“Fine. So you would rather him…you’d rather let him—“
“WATCH OUT!!” Francesca screamed as Evan slammed on the brakes.
A blue Honda Civic furiously honked at them as angry, indistinct words from the driver infiltrated through the window.
Evan smiled meekly, apologetically waving him forward. The driver slammed on the gas pedal and sped around the corner, a train of cars following him. Francesca calmed her pounding heart, turning around to fuss with Jeff, who was wide-eyed and puzzled in the back seat. The rest of the car ride home settled back into its harsh silence, only broken by the soft sounds of Jeff’s ragged breathing.
Later that afternoon, with Jeff tucked under the blankets for his pre-dinner nap and Evan back at work, Francesca was left with only her thoughts as she prepared their dinner.
The blade thudded against the wooden chopping board as she sliced up chunks of chicken. She covered them in rosemary and pepper, adding some olive oil to the pan before throwing in the meat. While waiting, she unscrewed a jar of applesauce and mixed in some extra cinnamon before putting it in a pan to warm. She smiled to herself, anticipating Jeff’s look of excitement when he saw the warm applesauce. He was a picky eater, but it had consistently been one of his favorites. Turning the stove down low for the chicken, she began tidying up the kitchen.
Evan arrived home, stopping only to throw a file folder on the kitchen table before heading upstairs. Francesca sighed and went to check on the chicken again. Almost ready, she thought.
“Francesca! Come quick!” Evan’s voice bellowed from upstairs. Her heart flew to her throat as she hurtled up the stairs.
Her heart seemed to precede her as she flew toward Jeff’s room. Evan was kneeling by Jeff’s bed, patting his face gently yet urgently. Jeff’s skin was a pale blue, his delicate lashes closed.
“Jeff, Jeff baby, c’mon, wake up,” Francesca said in a low, frantic voice, cupping his cheek in her hand, simultaneously feeling for his pulse. “C’mon baby, I know you’re there. Wake up honey,”
There was a tiny fluttering of lashes. “Mmrrhmmmm?”
Francesca’s heart released itself from her throat. She looked up at Evan, whose raw, torn grey eyes met hers for a second before they turned to their son.
“You alright, kid?” he asked in his husky, affectionate voice. Jeff’s face wrinkled in petulant sleepiness as he turned his back to Evan. “Wanna sleep,” he mumbled.
Francesca chuckled as she saw Evan wrinkle his nose in amusement, and they both breathed a sigh of relief.
As they went downstairs, the mood instantly changed to resentment. “How many times have I told you that you need to check up on him more!” Evan shouted.
“I had just put him to bed! He was fine! And you know how light of a sleeper he is, Evan! I don’t want to wake him from his naps!”
“What if he actually stops breathing one of these days? Would you be afraid to wake him then?”
“So you’d rather me wake him every ten minutes? He needs to rest, Evan! He needs the strength to recover! You’re telling me to listen to Dr. Singh—why don’t you listen to him too!”
“Are you listening to Dr. Singh? Maybe if you’d just explain yourself, it would be so much easier! I have no idea what you’re thinking—just silence, and crying and—“
“I’m entitled to my own thoughts, Evan! I just—“
Jeff came wobbling down the stairs, rubbing a sleepy fist in his eye. Francesca and Evan glared at each other with hard eyes, and then Evan moved toward Jeff.
“You want some dinner?” He picked Jeff up.
“On the stove,” she snapped at him.
Evan made no answer, but Francesca heard him pulling out a plate. “Mommy made some chicken, do you want some chicken?”
“Yeah.” Jeff’s voice was still edged with the fuzziness of sleep. “I want applesauce too!”
“Chicken and applesauce,” Evan chuckled. “You got it. You eating?” he shouted to Francesca from the kitchen.
“No, I already ate,” Francesca sat on the couch, arms around herself. “The applesauce’s on the stove.”
Evan walked into the living room, plate of chicken in one hand and Jeff balanced on his hip. Jeff clutched a spoon, banging it lightly against Evan’s head several times before earning a stern but quiet reprimand.
“Sorry, didn’t hear you. What did you say?” Evan asked.
“I already ate.”
For a second, Evan regarded her coolly, remotely, with his grey eyes. He chose not to acknowledge her obvious lie, instead settling Jeff down on the couch where he bounced happily over to Francesca, burying his face into her neck. “Momma!” he giggled.
“Hi, baby,” she settled him on her lap, unable to keep back a smile. “Let’s eat dinner!”
Evan passed the plate to Francesca as he turned on the TV, and the raucous noise of a basketball game filtered through the living room. Jeff’s appetite was good today; he finished most of his applesauce and a couple of bites of chicken before protesting for his release. Francesca handed the plate to Evan, whose eyes were fixed on the TV screen, and he scarfed the remainder down mindlessly.
She got up, stopping to listen to Jeff in the next room crash together his trucks and toys, replete with a variety of sound effects. Smiling and shaking her head, she walked back to the kitchen.
She was washing the dishes, scrubbing at a pan when Evan walked in. Wordlessly, he ripped off a paper towel and began wiping down the counters. A hypersensitivity of each other’s movements built up, an awkward, almost frightening acuteness of the senses. The swishing of the water, the clink of the plates upon other one another, the long sweeps of Evan’s arms over the counter, their bodies almost repelling each other with an untold energy as he moved by her…Francesca felt like screaming, but forced herself to remain calm.
The trashcan beside her opened, and the dirty paper towel dropped into it. Francesca could not see him, but she knew Evan had drawn up a stool to the island counter and was watching her as she finished up the last couple of dishes. The scene itself was not unusual; even just several months ago, a comfortable silence would weave its way between them. Francesca would hum a tune to herself as Evan would sit and think while watching her. When they felt like it, one of them would ease a little interesting fact into the silence or start talking about their day. Sometimes, he’d even come up behind her, and just hold her while she finished the dishes, nuzzling her neck and whispering as she smiled at their reflection in the window. Now, the silence was dangerous, and Francesca knew she would not be the one to shatter it.
“Francesca.” His voice was soft, but still her spine stiffened.
She put down the last plate reluctantly, stripping off her gloves and slowly turned to face him. His eyes were pleading, but she could see the anger boiling behind them. “Just tell me what you’ve thought more about it.”
Francesca was silent.
“It’s really not that hard, Francesca!” Evan raised his voice.
“You’re not going to get an answer if you talk at me like that.” Her voice was soft, but firm.
“Fine, fine.” He ran a frustrated hand through his hair. “I just want to know.”
She sighed. “We already decided that we weren’t going to have any more children. But it’s not just that. I would like another addition to our family, but….”
“But?” His voice was uncertain, but it rang with faint glimmers of hope.
She hugged herself tighter. “I just don’t think we’d be having Jeff’s sibling for the right reasons,” she whispered, tears coming to her eyes. It’s not going to hurt the baby, it’s not going to hurt the baby, it’s just cord blood, she thought. But how can you feel right about conceiving a child for pure ulterior motives?
“The thing is…I feel like this child would be an afterthought. Like the only reason why we’d decide to have another kid is because we need him to save Jeff.”
“Yes….” Evan’s eyes were intent on her.
“Like an ulterior motive,” she finished cautiously.
“What does it matter, if we’re going to love the child anyways? You really think we’d just—”
“I know that Evan! I have no doubts about that! But I’m just saying, it seems like we’re having him first for his spare parts, and then loving him. It’s sort of like putting a condition on our love—if you have what we want, we’ll give you love. I know, I know that’s not how it really works. But you wanted to know what I was thinking, and that’s what I think.” She folded her arms across her chest, tears filling her eyes again. “I don’t want you to think any less of me, or that I’m a horrible person—“
“Francesca.” Evan looked at her. “How could I ever think that?” He gave her a half smile, but made no move to hold her hand, or hug her. “I’m just…trying to reconcile our ideas.”
Francesca studied his face for a second, unable to read it. “Fine. You let me know what you think.” She swept out of the room, leaving him in silence.
An hour later, while Francesca was pretending to read in bed, the floor creaked, and she looked up. The figure of Evan stood in the doorway, leaning on the frame.
Francesca kept a level gaze at him until he looked down. “So….I’ve been thinking about what you said. And I understand where you’re coming from.” He scuffed his foot across the carpet, clearing his throat. “It does seem a little…questionable to conceive a child as an afterthought. But I think that we’re great parents. Obviously, we’d love the kid, and in the long run, I just feel like it’s not going to be that big of a deal.”
“I know.” Francesca put down her book, and folded her hands in her lap. She examined a cracked nail. “But right now, the idea of even conceiving a child for the wrong reasons just doesn’t sit well with me. Living with the guilt of knowing that reason—”
“I understand, and I get what you’re saying. But when we have two healthy kids, it’s not going to matter, right? And really, I’m not sure we need to tell this child that this happened, until he’s a little older.”
“I mean—that’s getting a bit far in the future, but yes, I agree.” Francesca sighed as Evan sat on the edge of the bed.
“So you agree?” Evan sounded dangerously hopeful.
Francesca closed her eyes, and then looked him square in his. “I’m not promising anything, Evan. Let me think. Give me time.”
Evan stood up, walking out the door. “Like Dr. Singh said, you don’t really have that much time left.”
“I’m highly aware. You don’t need to remind me every hour,” Francesca snapped. Evan stormed out, his footsteps thundering down the stairs.
Dr. Singh opened the door, and sat down. “Hello there,” he said, curiosity piquing in his voice.
“Hi,” Francesca said breathlessly, adjusting herself in her seat, letting a protesting Jeff go play with the enticing Legos in the corner. “Thank you for meeting with me on such short notice.”
“Not a problem—I’m glad I had this morning free. The nurse didn’t give me much information— she just said you called this morning and wanted to meet with me. What can I do for you today?”
“Evan doesn’t know I’m here, just by the way,” Francesca traced a line on Dr. Singh’s desk. “I wanted to speak with you in private.”
“Patient confidentiality is something that I value highly.” He waited for her to begin.
“I don’t really know how to put this,” she laughed nervously.
“Are you informing me of your decision for Jeff’s treatment?” Dr. Singh asked her gently.
“Oh, no.” Francesca said, a little shocked. “I wanted to…I guess I wanted to discuss one particular option with you. Having another child...”
For the first time in all of their appointments, Dr. Singh averted his attentive green eyes from her face and gazed out the window.
“This has always been a divisive issue. I don’t want to give you my opinion of it, lest I taint your decision-making process. It is up to the patient to decide their course of action. However, I can give you a more scientific perspective, if that would help.”
Francesca sat back in her chair. “That’s fine. I’m not expecting any answers. I’m just worried that Evan and I will be conceiving a child for the wrong reasons. That the conception is first and foremost because we need his or her cord blood cells, and then the love of the child comes after. It just seems like we’re prioritizing our love for Jeff over this child, and I don’t want that to be the case.”
Dr. Singh merely nodded, willing her to continue.
“And I guess, as another question—I know that I definitely will love the child because it is my child, but when he or she finds out, don’t you think that at some level, they’d think that they were loved only because they could save Jeff?” Her eyes searched Dr. Singh’s face imploringly, whose kind green eyes were impartial.
Dr. Singh sat back in his chair, sighing. “I think that’s a very circular argument. And to address your concerns—they are all very valid, and definitely not something to be dismissed or to be judged by others. I can’t tell you much more than if we undergo this process, and a match is found—remember, it’s not always guaranteed that the embryos will prove to be viable matches for Jeff—then Jeff will be cured. I also wanted to add that this process is grueling for your body—“
Francesca waved her hand dismissively. “That doesn’t matter.”
Dr. Singh paused and nodded. “Like I was saying, this child will have nothing taken from it but the cord blood. As a physician, and from my professional training and experience, I can tell you that, while every disease progression is different, if Jeff doesn’t receive some sort of treatment within a year and a half, his odds of long-term survival are drastically reduced.”
He paused here, as if trying to gauge Francesca’s emotions, but she was expressionless. “Telling your child and dealing with his or her feelings about it comes much later, and if counseling is needed, your family is always welcomed back here.”
Francesca sighed. “I just can’t decide. Of course I want to save Jeff. But it’s just those little nagging doubts...” She stopped to look over at Jeff, tears coming to her eyes.
“I’m just not the type of person to jump into a decision before I’m one-hundred percent about it,” she said softly.
Dr. Singh’s green eyes seemed to smile, accentuating his premature lines around his forehead. “Everything you do is a little leap of faith. This gap is just bigger.”
The conversation with Dr. Singh reverberated in her head all afternoon. Today was Evan’s short day, so he would be home soon. She rose from the piano bench and made her way lightly up the stairs. Opening Jeff’s door slightly, she smiled as she saw the sunlight splashing over his smooth cheek, mercifully pinkish, his breaths coming in slow, short, sharp gasps. In this light, he seemed like any other normal child taking a late afternoon nap.
She tiptoed her way downstairs, back to the piano bench, where she drew her feet up to her chest. Still, she could not shake her doubts. It seemed like a betrayal of trust, of love—a betrayal, because children assume that their parents had them out of an innate love for who they are, their being and their existence. But to know that you probably wouldn’t have even been conceived if your older brother hadn’t needed your umbilical cord blood cells? That was a completely different matter. Wasn’t it?
Her body tensed as she heard the garage door opening, followed by the low growl of the car entering. The car door slammed, and the door to the garage opened.
She could see Evan taking off his shoes and ducking through the doorway out of the corner of her eye. Opening the door before taking off shoes always seemed completely illogical to Francesca, but he'd done that for as long as she could remember.
“Hi,” Evan said as he walked into the house, spotting Francesca in the kitchen.
No customary hug and kiss, just a “Hi.” She gave him a half-hearted smile. She missed Evan’s affections acutely, but his words from last night still stung bitterly in her ears.
“Haven’t thought about it much, eh?” Evan said under his breath, as he made his way up the stairs.
“Have you thought about it from my point of view?” Francesca folded her arms across her chest. He stopped, and turned around.
“Not when my son can’t breathe,” he shot at her.
“Evan! Try and think—if you were our child, what would you think if you discovered that the only reason you were ever conceived was because your sibling needed your cord blood?” Her voice trembled with emotion, but she held her ground, her chin raised levelly toward him.
Evan’s grey eyes had been hooded as she asked this question. Now, they kindled as they opened wide. He stepped down the stairs without breaking eye contact with her.
“I would think about how lucky I am to have been born into such a wonderful family. A dad who loves me, and a mom who would do anything for me—why, that’s just incredible. And as for my brother—he always has my back, and he’s my best friend. That’s what I would think.”
Francesca blinked, stunned. “I—I mean…” she stuttered.
“But that’s all theoretical, isn’t it?” he turned around, stomping back up the stairs to get Jeff.
Francesca fumed as she prepared the table for their dinner. Evan returned downstairs with Jeff on his hip, retrieving the pasta from the stove. She watched him, a low fury grumbling in the pit of her stomach.
“I can’t do this, Evan,” she said as she strode toward the jacket closet. “I refuse.”
Evan’s arms fell limply to his sides as he finished ladling spaghetti into Jeff’s bowl. “Where are you going?"
“Post office. Got to mail something to Mom.” Francesca picked up an already-wrapped package of books and chocolate that her mother wanted and let the door slam behind her.
The cold air stung her face, painful but refreshing. It was a grey evening with a thin layer of clouds covering the darkening sky, muting all the colors of the earth, making her hyper-aware of the wind rushing against her face.
The walk to the train station was a good ten minutes. Jogging up the stairs as she heard the train thunder into the station, she hopped into the metal car and sat down. She preferred the train to her car because driving was very nerve-wracking for her. She liked the relative solitude one could get on the train; she enjoyed watching people as they made their journey back to their own lives as they diverged from hers.
Besides, the car reminded her of Evan. It smelled of his musky scent, his gum wrappers littered the dashboard, gym shoes in the backseat—she did not want to be so close to his presence.
The train arrived, depositing her within sight of the post office.
Francesca hurried across the street, again bracing herself against the cold wind. She opened the post office’s imposing doors, her heels clacking along a floor of black granite. The place was so frigid and stern that Francesca often felt as if she were walking into a mausoleum. She shuddered, trying to banish the thought of death from her mind.
The line seemed unusually long today, full of tired, impatient, rustling people, bundled in dark coats and various bright mismatched winter accessories. Teenagers were checking their phones, and the older patrons sat back on their heels and stared politely at nothing. It was a cultivated art, Francesca felt—lost to the generation of kids with technology. An art to mask your impatience and keep your face devoid of expression—the art of stoicism.
Francesca took her place behind an elderly African-American lady in a black faux-fur hat and large yellow knit jacket. She twisted around to glance at Francesca, her eyes wide and venerable, then turned back again. She held a package that Francesca could smell from a distance—an ancient, earthy smell, unnatural in its bouquet. Maybe medicine, Francesca thought. She entertained the thought of a natural cure and quickly shook her head. There was no herb that could replace defective bone marrow. Nothing can cure him, Francesca thought bitterly. Nothing except….
A huge glass case to the left of Francesca held a life-sized iron statue of a horse and buggy, honoring how the postal service used to operate. A mailman sat on top of the buggy, reins in hand, smile permanently affixed on his face. Unseen wind made the horse’s mane ripple, its sleek body effortlessly pulling along the carriage. A young girl ran up to it, pressing her fingers longingly against the case, as if she could immerse herself in this magical, forever world. Her dirty-blonde hair fell in an unstructured mop to her shoulders, mussed with the carelessness of youth. Her reflection shone in the glass, her grey eyes precisely the shade of Jeff’s, her skin pale but flushed with the arrogance of normalcy.
Francesca contemplated her as the girl’s eyes shifted—and Francesca couldn’t tell if it was a trick of the light—but it seemed as if her reflection was looking directly at Francesca, piercing, guileless. Francesca felt raw, naked, all emotion exposed for this young girl to assess. In that same instant she saw Jeff in the glass—his dark grey eyes surrounded by a healthy, vigorous, innocent face—searching her, appraising his mother. It was Jeff but it was not quite Jeff—eerie and foreign in its hybrid, too familiar to be comfortable.
Francesca gasped, stumbling backward. She steadied herself upon the railing as the old lady in the yellow jacket her grabbed her elbow to keep her from falling. “I’m so sorry; thank you—“
“Are you ok, miss?” The old lady’s level eyes sparked with concern.
Would you really have a baby, just to save another?
“Yes, yes, I’m fine,” Francesca insisted distractedly.
“Keep strong,” the old lady murmured, offering a small smile of comfort.
A curiosity keened through Francesca’s mind as she regarded the old woman—dignified brown eyes, staring from behind glasses like they carried a thousand years worth of wisdom—
“Next!” was insistent cry of the clerk. Francesca gathered herself up, hurrying to the window. She could barely recite her mother’s address even though it was the same one that she had lived in for more than 15 years. The clerk’s eyes were annoyed, but patient.
The minute the package was sent off, Francesca grabbed the receipt and rushed out of the building, not pausing to look around her. But she still felt the eyes of the little girl following her, a permanent presence in her mind.
"It’s not that I don’t want to save my son—“ she told herself.
Of course you do! But how are you going to spare your other child’s feelings when he finds out he’s just been a tool—
“But he won’t be a tool! He should be honored that he saved Jeff’s life—“
You know you’re going to be miserable, bedridden and diabetic for another nine months—
“That’s completely inconsequential!”
Still—he’s a tool, just a tool, artificially created, unreal—
You have to decide now!
"I know, I know—"
It’s the girl, isn’t it? Look at you, sick, crying, weak—decide something!
"I can’t, I can’t," Francesca panted to herself.
Face your doubts and make a decision! You can’t put this off anymore! Your son’s life hangs in the balance!
"Stop it! Just stop it!"
Tears threatened to freeze on her cheeks as Francesca hurried to the station. The pressure of the last week collapsed around her, punching her in the stomach, impaling her heart. She fought down the nausea she felt as she thought about Jeff’s savior sibling—she could fight its impending presence no longer. Francesca stopped on the sidewalk, dry-retching into the bushes. Her stomach rolled, but the image of Jeff in the glass would not go away. The back of the little girl’s head, Jeff’s face in the reflection. The dirty blonde hair, and Jeff’s eyes.
She leaned her head against the wall of the station, breathing hard. She had stumbled here, almost blindly, and she could see people looking at her with concern, but she couldn’t care less. She sobbed, letting her thin body shake as if it wanted to expel the soul within her.
“I can’t believe this,” her body heaving as it dry-retched again. “I just can’t believe this.”
A low rumble indicated the coming of the train. Pulling herself from her trance, she ran upstairs to the platform, jumping in the train as the doors closed behind her.
Catching her breath, she sank down on one of the seats next to the door. She took a deep breath as the train began to move, allowing herself to calm, dabbing away the tears on her cheeks. The old woman with the black faux-fur hat and yellow jacket sat across from her, worn leather purse on her lap.
Francesca looked away as the woman’s eyes briefly met hers, focusing on her still-nauseous stomach, arms wrapped tightly across her abdomen. Rows and rows of houses rushed past her in the late evening light.
“Excuse me for asking again, but are you sure you’re alright?” the husky, gentle voice interrupted Francesca’s trance.
She stirred and turned to the lady. “Sorry?”
“I saw you at the post office—you seemed so upset—and I couldn’t help wondering if you were alright.”
Francesca managed a weak smile as the woman continued.
“Believe me, there are going to be those days when you just get so caught up in things… just take a step back and have faith in yourself. I’ve had those days too.” she smiled kindly, shaking her head.
Francesca’s mind calmed a bit as she finally took in the sight of this woman. Her partially hidden eyes gleamed from behind her round glasses as she surveyed Francesca, chin high. Francesca gazed at her in wonder and puzzlement. The wrinkles around her face fell in perfect ripples, her dark skin venerably accentuated. What tears had run down those cheeks, what sorrows, torments and grievances had been heaped upon her shoulders, Francesca longed to know. But sitting in front of Francesca, her eyes were fierce, yet understanding, as if to say, “Nothing ever came easy, darling. You make some hard decisions, but you have to be proud of them.”
Francesca continued searched her face, mesmerized. The old lady sat there calmly, as the younger woman drank in every nook and cranny of her face.
“Yes. Yes, thank you. I’m fine,” Francesca finally said, rubbing her stomach, working away the waves of nausea and panic that were finally fading from her body.
“Oh!” The old lady looked at her with understanding in her warm brown eyes. “Are you pregnant?”
Francesca gasped at the question, but then looked down at her hands cradling her stomach.
“I…” Francesca hesitated, her mind a crescendo of Evan’s shouts, Jeff’s cries, the little girl, the little girl and Jeff’s face, Jeff’s eyes staring at her from the glass……
“The way you were rubbing your stomach,” the old lady chuckled. “I just thought…”
The roaring in her mind stopped, as if someone had just hit a mute button. Francesca felt a tingling rushing through her body.
“Yes,” she said, looking the woman straight in the eye. “I am.”