BENEATH THE WEIGHT
~
Dr. Strauss met the couple’s eyes steadily. “Nora has Spinal Muscular Atrophy.”
John felt Celia's hand go stiff where it rested on his knee. He wanted to reach out and take it, but his arms were full, holding Nora close to his chest.
“SMA is caused by issues with the survival motor neuron,” the doctor said. “It’s the leading genetic cause of death in infants.”
Though he cradled her slight head, Nora felt fragile in John’s rough worker's hands. The first time he saw her, it surprised him. She was so small. At two months, Nora still could not hold her head up on her own. John thought it was odd, but then he figured he knew nothing about how babies developed, and simply grew used to it. Back here at the hospital for the first time since Celia gave birth, seeing other babies swaddled and carried by their mothers, he understood now there was something very wrong.
John looked out the window, watching the rain pour out onto the dull gray buildings and streets. The doctor said something about the loss of nerve cells in the spinal cord and brain stem: most babies died before they were one, but Nora might make it to two if they were lucky.
Lucky.
Celia drew in a massive hitched gulp of air and let it out, her lips curved to stifle the shaking.
“How will she—” John cut himself off. “Will her heart stop beating?”
“Because the neurons for movement aren’t firing, the muscles begin to atrophy—they begin to shrink until she can’t use them at all. She will have trouble crawling, sitting up. Eventually, her lung muscles will stop working.”
“So, she’ll suffocate,” John said.
Dr. Strauss paused.
“Yes.”
~
A few days after, Celia and John went over the treatment options Dr. Strauss gave them and compared them against what was available through their insurance. There were two options: a onetime 60 minute injection that cost $2.125 million, in payments over five years. An online article called it “The World’s Costliest Drug.” The other was twice the price, but paid over 10 years. A needle in Nora’s spine every four months would cost $125,000.
In the long run, the onetime drug was less expensive, but their insurance was less comfortable with shelling out over 2 million dollars up front. They settled on the long-term option requiring ongoing injections. After multiple conversations with their insurance, John understood they had to accrue roughly $8,000 in medical fees before insurance would step in.
John sat in front of the paperwork, his head swimming in the medical legalese the insurance company had sent him. Celia sat next to him, rocking Nora in one arm and holding a bottle of warm milk to her lips with the other. John pushed the papers away, realizing he wasn’t going to understand the financial structuring any further at that moment. He turned instead to what he did understand and had some control over; he picked up the paper and flipped to the classified section.
“What are we going to do?” Celia asked anxiously.
“I'll get another job," John said. He gave her a quick smile and returned to the “wanted” ads in the paper. “We’ll take out loans if we need to.”
He found some jobs, but they wanted help during regular business hours. He already had an eight to five job. Being a plumber paid well – not a house in the Hamptons for sure, but more than enough for a little house in the back hills of Massachusetts, and left plenty of extra money for side hobbies.
Looked like SMA would be his hobby now.
He got up and looked out the kitchen window at his boat parked in the back yard under the shed he was building. He hadn’t even gotten the roof on yet.
An online add sold the boat within a week for what he thought was a fair price. When he received the bill for Nora’s beginning treatment, he wished he had negotiated higher.
~
“We'd love to see you, Mom.” Celia spoke into the cellphone pressed between her shoulder and her ear while she finished writing down the items they needed. "—any time, I'm here all day."
John couldn’t help smiling to himself. His mother-in-law was remarkably active in his opinion; always involved in one event or another at her church. Margaret maintained a huge network of friends beyond the typical demographic radius of a seventy-year-old woman.
In the last two weeks, other than doctor’s visits, Celia stayed at home most of the time. Still learning the best way to take care of Nora, she was too nervous to bring her out when her attention might be divided. To Margaret, there was no such thing as a day spent at home, and her daughter used to be the same. Margaret had been the first-person Celia called and told about Nora’s SMA, and Margaret had turned up on their doorstep with a lasagna the next afternoon.
“No, we’re good, John is going to the grocery store now,” Celia said to her mother. She passed him the grocery list to him and mouthed ‘bye’ with a wave. “We’re all set Mom, thanks though.”
Driving to the grocery store, his eyes searched for “help-wanted” signs like a parched man looking for water. But they were all day jobs—he could only work the weekends. Pushing a carriage down the aisle of the massive grocery store, he followed Celia’s list, putting a large bag of diapers into the cart. He didn’t even look down the beer section.
He had met Celia at a party hosted by their mutual friend Derek. John always assumed he was not the settling down type, but when he saw her, he knew he was in trouble. It took several shots of Vodka and a few beers before his inebriation overbalanced his apprehension, and he asked her for her number with faltering bravado.
She said no.
When he pressed her for a reason, she said she wasn’t into drunks.
The following month, he harassed Derek until he agreed to throw another party and invite Celia. At an appropriate interval, John approached her. He was shaved, well dressed, and confident, despite the smirks he felt coming from Derek and his other friends on the opposite side of the yard. She had looked at him in apprehension, but he spoke before she could shoot him down again: “I think 30 days without one drink deserves at least one date.”
He took her grin to mean she agreed. A year later, they toasted at their wedding, drinking a modest glass of champagne with linked arms. Looking into her hazel green eyes, illuminated with joy, the lightness in his spirit was unrelated to the sweet bubbling in his glass.
At the checkout register, the numbers added up faster than he would have liked. He looked away, and his eyes caught the “Help Wanted, Night Shift” sign in the window.
“Hey,” he asked the attendant, a high schooler with floppy black hair covering one of his eyes. “What is the help wanted for?”
“Huh?” His name tag said ‘Henry,’ which seemed a little too proper for this kid.
“Help Wanted, Night Shift.” John pointed to the sign on the window.
The boy looked, then looked back at him strangely.
“I don’t know, man.”
John paid for his food, brought the bags to the car, and went back in to talk to customer service. It was a stocking job, and the manager said they needed strong men to help with the big stuff. It didn’t pay great, but it was the only night thing he could find. He filled out the application right there and the manager said he’d give him a call.
Walking back to his car, an explanation for the attendant’s expression dawned on him; was it awkward discomfit? A grown man buying diapers scrounging to work the night shift of a grocery store—what kind of loser did that?
John gritted his teeth. People had looked down on him when he decided to be a plumber, and guess who had enough to take his wife on a cruise the summer after they got married?
Thinking back on that trip made him nauseous; all that money he’d spent, all that fancy food he bought for them, the romantic suite, the fancy lingerie. He should have saved it.
With a sudden desire for sweet release, John regretted not walking down the beer section. He debated going back inside. The urge left when he thought of the expression on Henry’s face.
~
John started his new job at the grocery store two days later.
He gave Celia a quick kiss. "Don't wait up," he joked, half-serious.
Her hand trailed on his arm until he was out of reach. She returned to her project of organizing the medications in the cabinet. It was as though she felt guilty for staying home.
Though they had talked with insurance, they were still waiting for full approval. The hospital let them know it sometimes took ten or twelve weeks to get approved. It galled him: the longer they waited, the weaker Nora was when they finally started the treatment, and all because of paperwork?
At least he could do something in the waiting. To start the treatment, there would be four “loading days.” A spinal injection on day one, fifteen, thirty, and sixty. He wanted to be as ready as he could be, though working at the local grocery store admittedly felt pitiful in the face of a $125,000 price tag for each visit.
On the drive over, his phone buzzed. The caller image was Derek, golfing off his neighbor's roof at four in the morning, in his underwear. John took the photo about a year before he met Celia, on a particularly boozy evening. The picture made him smile every time.
“Hey.”
"Johnathan, what' sup? So, listen, the guys and I are getting together for a night out. Think Cel can spare you?
“No, can’t make it man, I’ve got work tonight.”
“What? What do you mean? You’re a plumber; someone calls you for clogged pipes at ten pm, you tell them you’ll see them tomorrow.”
John smiled. “No, it’s not that, I’ve got another job.”
"You hurting for cash, brother? I thought you plumbers did alright for ya selves."
“Yeah. We just found out Nora has some medical issues. Don’t worry about it though man, I’ll catch you another time.” John said, knowing he probably would not.
“Oh,” Derek’s voice lost its jocular edge. “I’m sorry to hear that man. Anything I can do?”
“No, we’re alright, you have fun though.”
“Alright man, hey. I’m here for you, any time you want to get together for a drink, you call me up.”
~
Being in an empty grocery store at night, under yellow lights, had a spooky quality. As though the zombie apocalypse had finally happened and he was one of the few left alive, stocking the shelves of the foods he planned to live on. There were other guys, and a few women, who worked the night shift. He had no desire to share anything of his life and kept mostly to himself.
At seven, he drove home. Celia was up with Nora when he got home. She had an amazing breakfast ready for him, which he ate quickly before heading up to bed for a quick nap. His first appointment wasn’t until noon that day, thank God.
“How was today?” Celia asked him that evening as he dropped gratefully into bed. He pulled the covers up over his shoulders, yawning.
She snuggled in close to him. He started to dose, already halfway gone.
“My mom visited,” she said.
“Mmm? How was that?”
“Good.” Another long pause. “She invited me to go to church with her.”
From what he knew, growing up she used to attend all the events in her mother’s Protestant church. She stopped for a period, while at college, and didn’t start back up again.
John had been raised Catholic, but his parents stopped going when he was about fifteen. John hadn’t given it much thought since. The complexities of high school and then adult life didn't seem to fit inside the stone walls decorated with incense candles. They had been married at Celia's church since there were still many people there she knew, and John didn't feel particularly connected to St. Mary's. Aside from that, and the occasional holiday service, church didn't come up often in their life.
“I’d like to go,” she said. “Want to get out of the house a bit. I was wondering… would you be willing to watch Nora during that time?”
“Sunday?”
“Yeah.”
“Sure.”
“You don’t mind? I’ll make sure she has her medications before I go –”
Hearing the anxiety in her voice, he realized she was having trouble walking away, taking a break when their daughter might need her.
“Yeah, you go, I’ll be fine.”
~
The following Sunday, Celia was in a whirl as she fed Nora, gave her the necessary medication, and then showered and dressed. She set Nora down on the carpet with some blocks around her, hoping to entice her to crawl, roll, or even just wiggle over.
John settled himself down on the plush carpet next to Nora, his back leaning up against the white bureau. She cooed when she locked eyes on him. Her fingers fluttered, and he wondered if she were trying to reach out for him. Smiling, he leaned closer to the wiggling bundle and put his rough finger in her palm. A rushing filled his heart and his eyes burned. She smiled at him, tracking his movements.
Then she made a face and squirmed. She looked like she was really working hard on something. Her face grew red with the effort, scrunched up, though not crying. He watched her with growing fear. Something was wrong. He’d never really seen her behave in such a fashion. Celia would know—damn—Margaret would probably know.
He heard the muffled release of pressured gas.
Satisfied contentment returned to his daughter's face.
Relief filled him. He picked her up, careful to cradle her head and the soft neck, and pulled her close, eye to eye.
“You just had to poop huh? Well, if there’s one thing I know about, it’s back-ups. Let’s get that cleaned up for you, missy.”
He changed her diaper and then set her down on her stomach with her blocks. This was a much better position to begin crawling. She wiggled to push herself up a little, but it took tremendous effort. He put some of the colorful toys closer. Her eyes locked on them, and she reached out for them. Or at least, she tried to: she couldn’t lift her head.
The pain threatened to rip him in two. Nothing in all his life, even the current hell of working more hours than there were in a week at menial jobs, hurt him like watching her struggle to attempt the most basic and unconscious of human movements.
He felt himself recoil internally and begin to shut down, close off. If she was going to die anyway, no matter how hard he worked, no matter how fast he ran or how little he slept, then he should not let himself get attached. It would hurt too much when she was gone.
Shame filled him. He realized now he had been trying to distance himself from his daughter; trying to protect himself by handling the problem without getting too close or emotionally attached.
Nora's frustration at her inability to touch the blocks began to show. She whined, then panted, then a whimpering cry began to form until it trailed off. John watched her back as she struggled for breath, and he understood suddenly why Celia had put her on her back: it was easier to breathe.
He quickly scooped her up, cradling her neck, and lifted her to his chest, terrified at what might have happened. Nora's whining cries were interrupted. She gurgled as she landed on his chest, looking up at him.
Her shoulder moved as she reached for his face, apparently curious about the thick black hair carpeting his chin. He lowered his face to her hand, allowing his scruffy chin to touch her nose. Her face lit with surprise and her fingers touched where she could reach. The two of them looked at each other.
Her eyelids dropped, fluttered, and then shut. She rubbed her face into his chest, and the pleasure of it was like a lightning bolt through his heart.
~
The next two Sundays, Celia went to church with her mother. They finally received approval from their insurance company to start treatment, with the provision of a co-pay. John had almost enough. They started the “loading days,” and in the weeks in-between John worked overtime to have enough by the time the payment was due.
At the fourth and final injection, he waited in a side room with Dr. Strauss while Celia stayed with Nora. They had to give Nora an anesthetic to hold her still. He felt hollow, like he had just run a four-month-long marathon.
“Feel free to call with any questions, as I mentioned before, there can be side effects. Otherwise, I’ll see Nora in four months for her next injection. Then we’ll see where we stand.”
John looked at Dr. Strauss, his brain unable to decipher what the doctor was saying.
“What do you mean?”
“The results can be promising, but we’ll know how Nora does with the treatment soon enough.”
How she does… In John’s mind, the treatment was the finish line. Once he had the money to pay, they were in the clear: she would get better.
Reading John’s continued blank look, Dr. Strauss elaborated. “There’s a forty percent success rate with this treatment.”
The doctor gave John a measured look. Forty percent? When had anyone mentioned that? Had he blocked it out? His mouth felt dry. He cleared his throat.
“The other treatment option, is the success rate better?” He knew it was a futile question; he could barely afford this, the cheaper of the two treatments.
“Hard to say, it’s still experimental, and not everyone qualifies. They’re still in the early testing season. They’ve had good results, but those could be skewed due to various factors.”
The after-wave of shock rippled through John and he felt his face grow hot, no longer listening to Dr. Strauss. It might not work, never mind not being certain if he could earn enough in time, there was a sixty percent chance it wouldn’t even matter.
~
After that, whenever he went to work, restocked shelves in the grocery store, drove to fix the pipes in someone’s house, installed plumbing in new residential buildings, like a drip he was so often called on to stop, he wondered, Is it happening now? Is she losing her breath and choking? Did it already happen, and I didn’t get the call yet? It felt like such a waste of his time to be away.
When he got home, he would find Nora just a little weaker, and then he knew he should be at work, earning money. If he had enough, she could receive the next injection. It felt like a vicious cycle, and he was never where he should be. In his mind the two were linked; his work, his effort, his ability to afford the treatment, meant Nora would pull through. It would succeed, if only he worked hard enough.
He had four shifts a week and wanted to take more, but the toll was beginning to show on his body. The constant anxiety of wondering if Nora was in pain—if she was suffocating right then—ate away at him. His patience for drivers on the road dissipated and he became more aggressive, trying to get home sooner, or not being totally present on his drive to a residential customer, often missing his turns. He couldn’t think straight during the day, but then he was so wired, worried about Nora, Celia, the money, that he couldn’t fall asleep laying in his bed at night.
Driving home one day after a long shift, he felt himself splinter off. He couldn’t take the pressure anymore. He needed a break, a moment to step back and not think about Nora or any of it. He just needed a moment, an hour or two where he could step back, think about something else, and have fun. Then he could come back and face it all.
Feeling desperate, he pulled into the parking lot of Hoops and Hops, the old bar he used to visit when he was still single, and sent off a text to Derek. He hadn’t even entered the building before his phone buzzed with a text back: ‘Be there ASAP.’
John hadn’t quite finished his first beer by the time Derek showed up. He clapped him on the shoulders with a quick scrunching on his trap muscles.
"John, what's up?" He signaled to the bartender, not bothering to specify.
John shook his head. “Nothing.”
“Common man, nothing? What’s up with Cel? How’s the baby?”
John shook his head again. His pocket buzzed. It was a text from Celia: ‘Where are you?’ He felt the weight rising up inside of him, but it was nice to sit with someone completely outside the situation and its heaviness. He tucked the phone away.
“Not good. Don’t really want to talk about it.”
Derek watched him for a moment. He didn't press, but he did signal to the bar sender for another round for John and launched into a story about his most recent drunken escapade involving a squabble with a deli owner.
~
When John woke up the next day, he felt Celia stir next to him and knew that she was awake. He breathed in deeply. His head still swum from the previous night. Derek seemed to have made it his personal mission to catch up on all the drinking he’d missed since John had cut back when he started going with Celia.
When he was ready, he cracked open his eyes. Celia was watching him, hair tussled, a mess on the pillow. He closed his eyes, unable to bear the light.
“You were out drinking last night,” she said.
He didn’t answer. There was a moment of stillness, and then she flicked him in the temple.
"Ow," he mumbled, scrunching his eyes and rolling over to bury his face in the pillow. "Leave me alone.”
“I’ll make breakfast,” she said. He could hear the humor in her voice.
Being Saturday morning, he knew somewhere behind the throbbing in his brain that he had some appointments to make that day. He didn't think he could face it. Eventually, the smell of coffee and bacon made it into the bedroom. He groaned and got up.
Nora was nestled in a cushioned seat the store called a ‘Monkey Bouncer.’ It allowed her an upright position that also supported her head so she could see them. She let out a delighted screech when John walked into the room. He squinted and frowned as the sound spiked into his brain, but smiled as he took the seat next to her. He picked up her hand, playing with it. She watched him, gurgling with delight.
Celia put a full plate in front of him, and he ate gratefully as she alternated between feeding Nora and feeding herself. She was quiet, and John began to wonder if she was angrier than she let on.
“What are you thinking about?” he finally asked.
“I want a break too. I want you to take me on a date.”
He was relieved.
“My mother has volunteered to watch Nora,” she said. “I want you to take me out to breakfast after church tomorrow.”
He was grateful for the offer to have some time with his wife, though the venue was not precisely was he would have chosen. More and more often these days, when he came home from work Margaret, or other women from the church, were in his house keeping Celia and Nora company.
“You sure you wouldn’t rather go out to a movie and a nice dinner?”
“No, I’d like to go to church and have a nice lunch.”
She gave him a coy smile.
“I’ll pick you up at 8,” he said, relieved she wasn’t put out at him.
~
John followed Celia through the church’s main hall, which she was clearly comfortable with. He would have preferred the back row but followed Celia down the aisle, a few rows in, to some available seats.
There was music, and though it was familiar it wasn’t bad. However, he didn’t hear much, thinking on other things – the bills he needed to pay, the customers who hadn’t paid their invoices yet, the upcoming hospital visit. He attempted to focus. The pastor began to speak. In John’s opinion, he was an all-together too normal looking man. Probably a milksop academic with soft hands. But his next words yanked John’s attention back and he caught the tail end of the sentence.
“—For when I am weak, then I am strong. 2 Corinthians 12:1-10.”
What a load of shit.
Celia slid her hand into his own. He glanced over, certain she had been reading his mind and was shushing him before he embarrassed her. But she wasn’t looking at him. Her hazel eyes were on the preacher. For the first time in over a month, he realized, the stress had faded out of her face. She was listening with that slight frown, trying to understand. He didn't follow everything the man said and eventually became distracted again.
After the last song, John wanted to get going to lunch, but first one woman, then another, approached Celia. Celia lit up and started chatting with them. She introduced him, but after the initial greeting, he found himself enjoying watching Celia come alive.
The pastor finished his conversation with another man and walked past them. To John’s dismay, Celia greeted him.
“Richard, this is my husband, John.”
Richard stuck his hand out for a handshake. Yep: soft.
“Nice to see you again John. How’ve you been?”
He looked familiar; John looked at him closer. He was the pastor who had married them.
“Doing well, thanks.” John lied. Richard looked about the same age as him, perhaps a little older.
Richard frowned. “I’m sorry to hear about your daughter.”
“Thank you,” John said, feeling embarrassed. How many people had Celia told? They all stood in awkward silence for a moment, not sure what to say next.
“Well, I’ve promised to take Celia out to lunch,” John said, trying to end the conversation without being rude.
“Of course. Have a good lunch.” Richard smiled and moved on.
When he was out of earshot, John looked at Celia. "You told him?"
She looked at him in surprise. “It came up in conversation.”
~
Two months later, he was in Dr. Strauss’ office.
“Mr. and Mrs. Reynolds, the treatment we’ve given Nora seems not to be working.”
“What are you saying?” John snapped. Anger was a constant undertone for him these days. Dr. Strauss shifted uncomfortably. Screw him. He didn’t care whether the man felt comfortable or not. He kept his face blank.
“The success of treatments differs from patient to patient, based on the strength of that patient, and the rate at which the muscle neurons stop firing.”
"What does that mean?" Celia asked in a quiet voice.
"It means the best treatment for Nora now is to perform all of her care at home and hope for the best.”
They were part of the sixty percent that the treatment didn’t work for.
Celia was silent for a moment. “What about all of the hospital equipment? The nurses? I don’t know how to do all of that stuff. Some, but not all.”
"We will assign a nurse to come visit you and train you on what you need to know. For the equipment, we have the necessary at-home versions you can rent."
Rent. More money.
And it didn’t matter how much money, how hard he worked, he understood from the sad look in Dr. Strauss’ eyes; the inevitable would come.
They didn't say anything to each other as they left the hospital. John was so lost in his thoughts he didn't understand Celia at first when she spoke.
“I want my mother to move in.”
“What?”
“I need help.”
‘I am helping you,” he almost said. Instead, he kept his mouth shut, grinding his teeth.
“The nurse won't be a live-in, and I need help,” she said.
He didn’t say anything, but he could feel her watching him, debating.
“It gets lonely in the house, and I would appreciate her company.”
He looked over at her sharply.
“What do you want me to do, Celia? Stop working? I’ve got to work so we can pay for all of this.”
He startled her with his anger. Her eyes narrowed.
“Did I say that?” She waited. “Did I say that?”
“You implied it.”
She heaved a sigh, and then finally dropped the mask of carefulness she’d been hiding from him. “No, John, I don’t want you to stop working. But yes, I miss you because you’re gone literally all the time.”
“I’m working, you know that.”
“No, actually, I don’t know that. There are nights you’re not working, and you’re out drinking, probably with Derek and god knows who else—”
“Hey, you have your friends, I have mine. Maybe if you weren’t always at church or with those people, you would see me more often.”
She went silent. John regretted his words but refused to take them back. Finally, she spoke.
“It’s good that you have friends, John, but you aren’t talking to me. And that’s not fine.”
John locked his mouth shut. What was there to tell her? That he was terrified out of his mind about what was coming? That he could barely function, and it was all he could do to show up at work and not just end it all? That he was living for her and Nora, and it felt like both were slipping away from him permanently? He had no words for this, and no courage to deliver it even if he did.
The silence stretched.
“My mother is moving in,” she said.
~
A short while after their meeting with Dr. Strauss, Nora was put on a feeding tube and became officially bedridden. They moved her to their bedroom, and the hospital equipment transformed the space, as though they had turned a corner there was no coming back from. A hospital bassinet was set up next to their bed, where Nora was nestled nearly one hundred percent of the time. A tube ran from her stomach to the machine, where Celia would put in the food. The nurse placed a thin clear tube around Nora's face that went into her nose.
From what John could tell, Celia almost never left the room. She tried to keep physical contact with Nora as much as she could. Nora had her moments of fussiness and crying, but mostly she was quiet. Except when John walked in the room, then she would smile and gurgle. Nora would fuss and cry when her mother wasn’t touching her, which wasn’t often as Celia herself seemed unable to let her go. When they slept, Celia kept her hand in Nora’s just to the side of her bed, too scared they might hurt her in their sleep if they took her into their bed.
John took a leave of absence at his job at the grocery store, scared to be away from home longer than he had to, and completely burned out by then anyway. With the decreased stress of giving up one of his jobs, he stopped going out for drinks with Derek, knowing he would never forgive himself if he was not with Nora and Celia when she passed for a reason other than work.
Dr. Strauss visited them in their home one evening. The doctor seemed different outside the cold clinically sterile walls of the hospital. John was no longer angry with him, just tired. Dr. Strauss smiled at Nora, stroking her head and putting his finger in her hand as he checked her over. Then he spoke to Celia and John aside, voice low.
“You two are doing a good job keeping her comfortable,” he said.
“How much longer?” John asked.
“It’s not long now.”
Celia turned into John’s chest and cried. John and Dr. Strauss looked at each other. He wanted the doctor to tell him there was hope, that something else could be done that they hadn’t already done. But the professional compassion in his eyes told him otherwise. He had seen this before.
The time progressed like the sludge in the feeding tube—painfully. Slowly. There was nothing to do but wait, and nothing to do in that waiting. The whole house held its breath for each one of Nora’s.
He was on the road (filled with the uneven anxious anger he always wrestled with when away from home) when he got the call. He pulled off the road and took it, seeing that it was Celia. Every time she called, his heart pounded in his chest, until he heard her asking him to bring home something specific: eggs, iced tea, ant-buttons, a new prescription medication for Nora.
The overly long pause tipped him off, and he felt like he was in free fall. All gravity left, and he was just floating. Then he heard her breath,
“John, she’s—” Celia’s voice hitched. “She just past. She’s gone.”
~
More people came to the funeral than he thought would. Sure, family and friends, but many more people than that. He realized, a good number of them where the people from the church they had visited months ago. Celia had kept going for a while, needing the interaction with others and a break. She’d wanted him to come too, but he declined, not wanting one more thing taking up his time and energy when he was working so hard to provide for them. She had stopped going when Nora’s condition became serious enough that she couldn’t leave her with untrained strangers. They must have kept in touch.
Standing in the reception line, he knew less than half the people who walked by to give their condolences. Most of them wanted to talk to Celia. She nodded and thanked them for their kind words. Except for the men: the men looked at John and gave him firm but gentle handshake. After a while he understood the look he saw on the face of man after man: How are you surviving this? To them, this was the worst thing anyone could face.
They were right.
After they buried her (a pitifully small plot), and after the reception and all the food and people had left, John decided to go back to work and kept his appointments. When people called and said they needed their toilets unclogged, he went.
Celia was a quiet, grieving presence in the house. He felt the heaviness of her sadness and it weighed on him more than his own. He started avoiding the house, taking on more work, unable to face her or any conversation about Nora.
Finally, he began to notice that she was avoiding the house as well. Many days when he came home, she wasn’t there. He began to wonder where she was. He dwelt on it while he drove or worked on a pipe: where was she?
One evening he came home after a few hours with Derek, and found Celia sitting on the couch, watching television.
“Well glory-be,” he mocked, “she’s home.”
She looked up at him warily. If he was a little less drunk, he would have left it alone.
“Where’ve you been?” He baited.
“Right here,” she answered, “Where’ve you been.”
“No, you haven’t,” he ignored her question, “I come home, and you aren’t here.”
“Probably out with friends.”
“Out with friends,” he repeated sarcastically, flopping down onto the couch.
“Yes, women from the church.”
“Sure,” he said with disgust.
“What?”
“Why would you be out with them and not here with me?”
“John,” she said softly, “You’re welcome to come with me, I just thought you wouldn’t want to.”
He scoffed. She turned off the television, got up, and started to walk out. Fear and then anger filled him; he rose unsteadily but forcefully to his feet.
“You will stop seeing them,” he said.
She turned to look at him in shock. “John—”
“You’re my wife, it’s either me or them,” he said, confident there was no competition. She gaped at him. Horror filled him as the silence grew.
“John,” she said softly, “these people are my friends, they’ve helped me a lot—”
“If I come home one more time and you’re not here because you’re with them, we’re done,” he said with finality, and left the room.
John woke up late the following day, and it was clear she hadn’t slept in the bed next to him. She wasn’t in the house, but a quick check in the guest room where Margaret had been staying revealed that Celia had slept in there. He showered, shaved, and went to work, all the while regretting what he had said.
He went home early, wanting desperately to talk with her. He still didn’t want her seeing those people—he felt like he was losing her, like he had lost Nora. But he recognized giving her an ultimatum was not the way to win her back. He promised himself he was done drinking with Derek; he would focus on Celia from now on.
John pulled into the driveway and shut the car off.
Celia’s car was not in the driveway, and the lights were off.
He sat there for a time. Finally, he got out and walked into the house. It was still: no movement, no sound, a basket of baby toys in the living room he and Celia had not been able to touch. The place was filled with ghosts.
It was too much. The walls felt too close. The sky grew darker. He walked outside to the shed with the missing roof, empty for months now since selling his boat.
He didn't see the point of it, of any of it. There was no purpose to life. Why work so hard? For what? His only child had barely breathed air, his precious innocent child, who had done nothing to anyone, and now she was in the ground. His wife was done with him, had finally given up on him, and was looking in other places for the companionship she needed.
He found a length of rope on the ground that he had originally used for his boat.
It looked strong enough.
He took the rope and tied it into a noose. It would be poetic justice, fitting, that he should die the same way she had—suffocating. He had failed as a father, and this was his punishment. He would feel what she had felt every day as she struggled to get enough breath in her lungs.
The moment seemed too slow, as he looked down at the rope. He yearned to go find Celia, to tell her he would do whatever she wanted if she would just come back, but everything in him resisted. He was so tired; he didn’t have any strength left to save himself with.
He felt to his knees, tears running down his face.
“Please. Please,” he choked out.
There was no answer. All he could see in his mind’s eye was a cool drink on the counter of the bar. He dropped the rope and walked back to his car.
~
John sat at the counter, nursing some gin. Derek prattled away next to him, ordering him the next drink when he needed it. John understood now there was nothing left to their marriage; no daughter, no hope, no love. She had given up on him, and he deserved it. He was tired of it all, he was ready for it to be over, he did not see the point in going on.
He felt someone approach him and looked up. At first, he did not believe his eyes as Richard set his hand on the bar.
“Pastor.” John tipped his glass to the man and took another sip in his honor. “You here to tell me not to drink?”
“Let beer be for those who are perishing, wine for those who are in anguish. Let them drink and forget their poverty and remember their misery no more. Proverbs 31,” Richard quoted.
John stared at him, mouth open.
"No, I'm here to drink with you," he clarified, and signaled to the bartender.
Richard took a seat next to him.
“Did my wife send you?”
“Celia? No, I came for a drink and saw you. I’ve seen you here before.”
The bartender delivered his drink. Whiskey on the rocks. John raised his eyebrows; Richard was a usual at that bar? They sat in silence. Eventually, John spoke.
"Let me ask you something. Your God is loving, right?”
Richard sipped at his whiskey, assuming it was a rhetorical question.
“Why would God do something like this? Why would He punish a child? Or if it’s me He’s punishing, why should an innocent child suffer?”
Richard looked at him, listening, and sipping.
“Or maybe God isn’t really loving, maybe He doesn’t really care at all. But that seems kind of cruel to me, to just make us all so that we could live short lives, suffer and die.”
Richard didn’t respond.
“Or maybe He is loving, but He just doesn’t see everything that happens here, or maybe He sees it, but we’ve just overestimated what He can actually do about it. I don’t know, it seems to me if He were any kind of father, like you people say He is, He would do absolutely everything in His power to save us from this kind of pain, even if we deserved it. I know I would have."
John felt the tears fill his eyes. “I tried to. I did my best.”
Tremendous grief gripped his heart as he finally acknowledged the truth.
“My daughter is dead. My wife is probably leaving me. What kind of hope is there?”
John, Derek, the bartender, and Richard, were all quiet, no one man willing to lift the weight of that question.
Finally, Richard spoke. “John, I don’t have the first idea of what you’re really suffering right now. This is probably the worst thing anyone can go through. But the God I serve lost His only child too. If anyone knows how to carry you through this, it’s Him.”
~
Richard drove him home. Celia’s car was in the driveway. The lights were off in the house. He walked in quietly, but then saw a light was on in the kitchen. He walked in, and there was Celia, leaning against the counter, looking at him, tears running down her face.
“I thought you left,” she said.
They looked at each other for a long moment: so many things to say and no words to say them. She sniffed, wiped her eyes, and folded her arms over her chest.
“I’m sorry John, I can’t do it your way. I need people; I can’t just soldier through it.”
John shook his head, “My way sucks. I’m sorry for what I said last night.”
“I don’t want to lose you John.”
“I don’t want to lose you either,” he said. Finally, out loud.
“I know it’s painful, but I need us to talk about it. I don’t want to go through this alone.”
“It’s hard for me,” he gulped, “it’s hard for me to talk about it, because there was nothing, I could do to save… to stop her from…”
Her face crumpled. “John, you’re not God. You don’t have power over life and death. You need to let that go. You do what you can do and let go of the rest. And what you can do is not let me grieve alone.”
He went over to her and clasped her tight. He wept as he’d never wept before. He thought if he broke down, she would have no one else to depend on, that she would look on him with disdain. But she held him back and did not collapse under the weight of their combined grief. They were a long way from whole, not even close, he wasn’t sure if they ever would be. But in a strange way, with the two of them, the burden was easier to bear.
Powerful.