First She Escaped Syria, Now She's Searching For Medical Care In The US

The move from Syria to Texas was sure to be difficult, but Maryam had no idea how tough it would be.

Maryam whispered prayers as she moved swiftly through her tiny, dark living room in Dallas, gathering medicines and ID cards for the hospital.

She hoped this appointment would lead to better care for her autistic son, or at least explain why his epilepsy had worsened in the two years since the family arrived in Texas as Syrian refugees. With answers, maybe they’d be able to stay in the apartment complex where they face eviction because of his constant banging and throwing and screaming. Maybe Maryam’s red-eyed husband could sleep through the night instead of standing guard to make sure the 16-year-old didn’t escape and end up being returned home by police, again. Maybe she’d get to spend more time with their 8-year-old, the sweet, ponytailed girl who shushes her parents every time they discuss putting her brother in long-term care outside the home.

But first they had to get to the hospital. Maryam, 40, rallied the others. Hurry! We have to be there by 8! Her son, Mohammad, was writhing on the living room floor, naked except for an adult diaper that sagged on his stick-figure frame. Her husband, 49-year-old Khaled, struggled to pull pants over Mohammad’s legs, which were scarred from falls during seizures. Maryam grabbed cans of Ensure, pretty much all Mohammad eats, and checked the time. They still had to get their daughter, Sanaa, to school, bundle Mohammad into the car, and figure out the best route to the hospital through Dallas rush-hour traffic. Ya Allah, Maryam sighed. Oh, God.

The Obama administration set the refugee ceiling for fiscal year 2017 at 111,000; Trump cut it to 50,000.

Looking at this tableau of desperation, it’s hard to think of Maryam and her family as the lucky ones, but that’s what they are in the Trump era. They were among the last Syrians to enter the United States before President Donald Trump took office and made unprecedented cuts to the number of refugees admitted into the country.

The Obama administration set the refugee ceiling for fiscal year 2017 at 111,000; Trump cut it to 50,000. For this year, the cap is 45,000, the lowest since the program’s inception, and still analysts expect only half that figure to arrive given that just around 12,000 have made it so far.

Muslim refugees experienced the most dramatic drop, with a 91% reduction in arrivals in 2017, according to the Cato Institute, a libertarian think tank in Washington, DC. And the chances for Syrian refugees, who Trump has called the “great Trojan Horse” for ISIS, are especially grim — just 11 have been admitted to the United States this year, according to government figures.

The cuts also disrupt the lives of those already here. At the State Department’s directive, dozens of resettlement offices around the country are closing or slashing operations now that the refugee flow has reduced to a trickle, said Kathleen Newland, cofounder and senior fellow at the Migration Policy Institute, a nonpartisan think tank in Washington.

That means fewer English-language classes, less vocational training, and not enough staff to help refugees wade through the complex worlds of US health care, education, and employment. The result, Newland said, will be slower integration into US society and potentially higher costs to the government in the long term if, for example, refugees go to the emergency room because they can’t figure out how to see a doctor.

But even more concerning than the financial cuts, Newland said, is “the changed narrative coming from the top of the government” that paints refugees as dangerous and unwelcome. The right-wing rhetoric against resettlement is building again as midterm elections approach.

“There has never been a person in America killed in a terrorist attack by a resettled refugee. Never. Not one.”

“There has never been a person in America killed in a terrorist attack by a resettled refugee,” Newland said. “Never. Not one.”

Still, the right-wing refugee fantasy persists, bearing no resemblance to the hundreds of shell-shocked families like Maryam’s who are crammed into low-rent apartments in and around Dallas. Texas is second after California on the list of states with the most refugee resettlement in 2017, according to government data. In interviews, new arrivals from Syria, Iraq, and Somalia said their main concerns were finding jobs and learning English. They depend on donations for staples like food and clothing, watch helplessly as their children get bullied at school, and suffer overwhelming medical problems — often the result of torture and trauma — that go untreated for lack of benefits or because they don’t know how to navigate the US health care system.

In the case of Maryam’s family, whose last name is withheld for the safety of relatives still in Syria, the hospital visit they were getting ready for had taken months to arrange. They prayed the doctors would figure out why their son was vanishing before their eyes, with his protruding bones and worsening spasms. The videos Mohammad’s parents keep on their phones aren’t typical cute-kid moments but records of his seizures to show doctors, devastating scenes of him moaning and jerking uncontrollably on the floor. If they scroll back far enough, they reach pictures of their arrival in Texas in the summer of 2016, when Mohammad looked healthier, with round cheeks and a good appetite. That’s the boy they were counting on doctors to restore.

They were finally ready, with less than a half hour to make it to the appointment. They dropped off Sanaa and headed to the hospital in a donated Hyundai Santa Fe; Khaled drove and Maryam sat in the back to make sure Mohammad kept his seatbelt on. They got lost on the way despite the GPS instructions in Arabic. At 8:05 a.m., they arrived at Children’s Medical Center Dallas, one of the leading pediatric hospitals in North Texas, and joined a dozen or so other families waiting in the epilepsy ward.

Jittery and exhausted, the parents just wanted to collapse in their seats and listen for their son’s name to be called in a now-familiar Texas twang: “Mo-ham-ed.” But the curious teen wouldn’t rest, lurching toward employees-only doors and shouting so loudly that the other families in the waiting room looked away, politely ignoring the disruption. Khaled ran after his son, pulling him back just before he barged into a restricted area.

“This is nothing,” Maryam said wearily, watching Mohammad stumble through the lobby. “This is just the beginning.”

A ride-along with Fadya Risheq starts with climbing into a giant black pickup truck (“This is how we do in Texas”) and squeezing in alongside donated furniture, toys, and bags of clothing sorted by size. Risheq plays Lebanese pop songs as she makes her rounds, checking on some of the 250 families who receive help from the charity she founded in 2015, United Ummah for Refugees.

In the Dallas area, Muslim refugees are clustered in rundown apartment complexes that come alive at sunset, when the families emerge from their cramped quarters and gather on the lawn to share food and check on one another in a mishmash of Arabic, Urdu, Somali, and Dari. Risheq said the refugees, already struggling to come up with rent every month, rack up fines because they don’t understand that some parking spaces are reserved or that you’re not supposed to dry laundry on the landscaped shrubs.

Each of Risheq’s visits is a snapshot of the lives beyond the headlines, the human reality of terms likes “refugees,” “civilian casualties,” “war widows.” Risheq has a strict policy that her volunteers spend time with the families and don’t just drop and go when they make deliveries. That ensures a little companionship for people who, apart from their material needs, just miss having someone to talk to.

In one sweltering apartment, a Somali mother celebrated passing her driving test; Risheq wrapped her up in a tight hug. Back home, the woman’s husband had been executed in front of her. She was resettled in Texas with her elderly father and her children, including a son with disabilities. Her big rubber boots sat by the front door, easy for her to grab on her way to the graveyard shift in the freezer of a Mexican fruit distributor. She confessed to Risheq that the family hadn’t eaten meat in a month because she couldn’t figure out how to renew her food stamps. She also asked whether there was any chance of dental help for the front teeth that she'd lost while in a refugee camp before coming to the US. (The answer was “probably not.”)

“This is a slow process, but we can touch lives.”

“I only need three!” the woman said jokingly, smiling to show the gap.

At another apartment, Risheq dropped off a car seat and some baby clothes to the Syrian parents of a newborn girl. The wife’s elderly mother also lives with the couple and was having a rough time adjusting to the isolation. She wept as she described the humiliation of begging people for rides just so she could leave the apartment.

“May God make it easier for you,” Risheq murmured in Arabic as she patted the grandmother’s knee.

At a safe house Risheq’s group runs for single moms and women who’ve been abused, an Iraqi refugee hobbled out on crutches and squealed with delight when she spotted an electric wheelchair in the back of the truck. “My Mercedes!” she said.

Risheq, a Palestinian who also fled war and settled in Texas more than a decade ago, said tiny volunteer groups like hers are now lifelines for refugees who’ve seen resources dwindle since Trump took power. She is an impassioned advocate for the families, who welcome her into their homes with cake and kisses. Risheq takes no salary, she’s gone from her kids for long stretches, and she has no “off” switch. Her husband is a diehard supporter, but even he fussed when Risheq checked on refugees in Florida while they were there on vacation.

“This is a slow process, but we can touch lives,” Risheq said of her work. “We talk to them, we listen to them, we hear them, we guide them.”

Risheq steels herself to absorb all the stories, but sometimes a case will get to her. Three years ago, she became the guardian of a Syrian girl whose face had been disfigured by burns from an airstrike. The girl had been resettled in Texas without her parents, and Risheq couldn’t bear to see her bounced from neighbor to neighbor while a caregiver worked. Now, Risheq said, the girl is a bright 11-year-old who asks for thick novels to carry to school so the other kids won’t know she still struggles with English.

“She’s my princess,” Risheq said. “She tries so hard to fit in.”

These days, it’s Maryam’s plight that Risheq can’t stop thinking about. Risheq met the family the night she picked them up from the airport when they landed in Dallas. The case notes had mentioned a child with special needs, but she was unprepared for Mohammad, who screamed and flung off his seatbelt several times, forcing Risheq to pull off the road twice for fear he’d try to jump out of the car. The parents tried to restrain him, Risheq said, but they were spent from monitoring him closely over 17 hours of travel. Risheq watched in awe as Maryam cradled her son and whispered calming words.

This mother is a superwoman, Risheq recalled thinking.

Over time, Risheq learned the family’s story, which involved the same agony of violence and loss that millions of other Syrians had endured, but which was made even more difficult by Mohammad’s disabilities. After Khaled was shot through the hip in an attack by government forces, it became excruciating for him to keep up with his son. When Syrian forces swept through their block in Darayya, an ancient suburb of Damascus, the men hid in a secret cellar to avoid arrest. Mohammad’s outbursts would’ve given them away, so the family was forced to inject him with sedatives to save the group.

Early in the conflict, Maryam’s brother, a wealthy factory owner, was arrested in a regime crackdown to deter affluent residents from bankrolling the rebels. The family said his jailers pulled out his eyeballs in a torture session, left him to rot in an unventilated cell with 50 other men, then eventually released him. Upon her brother’s return, Maryam said, she washed him and tried not to cry over his empty eye sockets and the cigarette burns that dotted his body. The whole clan decided to flee to Jordan, joining an exodus that’s now swelled to 5 million Syrian refugees.

Maryam’s brother, who asked not to be named, eventually was resettled in Dallas a month before his sister arrived. Risheq’s group took on his case, then a month later welcomed his relatives. Not all of the family made it to Texas — Maryam and Khaled still have a married daughter in Syria, a married son in Jordan, and another daughter who came with them to Dallas but has since married and now lives in Seattle with her husband, a Syrian refugee who lost his legs in the war.

Risheq frequently translates for Maryam and helps her through the many tense interactions that stem from Mohammad’s behavior. He’s thrown objects at neighbors, resulting in fines from the apartment complex. He pees on the living room carpet, but Maryam can’t clean it and air it out on the balcony because of apartment rules against hanging laundry out to dry. When Risheq’s group brought the family a washing machine, Maryam had to stash it at a friend’s place because Mohammad kept messing with the buttons.

Maryam applied for Section 8 housing assistance, but then the family switched apartments to one that could better accommodate Mohammad. They’d never heard of a change-of-address form, so their Section 8 approval was sent to the wrong unit and languished until it expired. They’ve since had to apply again from scratch, relying on Risheq’s group for help with rent in the meantime.

This was the visit on which his parents had pinned their hopes for a tranquil new life in Texas.

Risheq’s heart aches for the family, but she believes in action, not pity. Already, Maryam has learned to drive and earns a small income by making traditional food as part of a Syrian refugee catering collective. Risheq is looking for other ways to relieve the family: checking to see if Medicaid would cover a home health aide, or maybe sponsoring a trip to the lake for the exhausted parents. Risheq’s presence has an immediate calming effect on the whole family: Mohammad adores her; his parents can vent.

That’s why Risheq accompanied them to the hospital the morning of their appointment. She knew how much was riding on the tests Mohammad would undergo; this was the visit on which his parents had pinned their hopes for a tranquil new life in Texas. What if there were no translator? What if something were to go wrong? Risheq had to be at their side.

Under the bright hospital lights, Mohammad was admitted, then cuffed with a yellow bracelet labeling him a fall risk. The nurses, through an Arabic translator, explained to Maryam and Khaled that their son would be kept for three to five days, long enough for the staff to monitor his seizures and examine an abnormal mass on his brain. The goal was to determine whether he was a good candidate for surgery.

Nurses restrained Mohammad with wide Velcro strips that functioned as a straitjacket. Next, one nurse began sticking electrodes to his scalp while another distracted Mohammed with games on a tablet she held in front of his face. Mohammad thrashed and shrieked, looking toward his mother with wide, terrified eyes. The nurse applying the electrodes sang to him softly: Twinkle, twinkle, little star, how I wonder what you are.

Once the electrodes were on, Mohammad’s head was wrapped up like a mummy to keep the wires in place. Then a squishy blue helmet was placed on top, a barrier to prevent him from yanking the cords and undoing the nurses’ careful work. But they couldn’t keep him strapped down for days at a time, and the second Mohammad’s restraints were removed, he leaped out of bed and made a beeline for the door, eager to escape this unfamiliar room.

Within 30 minutes, the teen, taller and stronger than his parents, pulled out a cluster of wires despite their attempts to stop him. Once again came the restraints, the tablet with the racing game, the moans, and the widened eyes. The nurses were empathetic but stern: This could not happen again.

Once Mohammad had calmed and the family had spoken with the doctor on duty, the parents divvied up tasks. Khaled would stay with their son while Maryam picked up Sanaa from school before returning to the hospital to relieve her husband.

Maryam kissed Mohammad’s cheek and said goodbye, but she wasn’t sad. As hard as it was to see her son trussed up and confused, she said, this is what it would take to ease his pain. She hoped he was approved for surgery because she could already see life beyond the recovery period: a family, still under one roof despite the brutalities of their journey, and no more do-gooders urging her to “put him in a facility.” She left with a smile on her face.

For now, it was over. Mohammad had to go home.

About two hours later, a hospital worker called. In solemn tones, she said Mohammed had once again pulled out the electrodes. He was “not a good candidate” after all. The doctor would discuss next steps with the family but, for now, it was over. Mohammad had to go home.

At the apartment later that evening, the mood was funereal. Khaled was beset with guilt. He was asleep next to me. I was so tired. I only closed my eyes for a second…

Maryam, usually the chirpy general rounding up her troops, sat defeated on the couch. Sanaa was snuggled next to her, eyes to the floor. Mohammad, however, was beaming. He played a cheerful Arabic dance song on his dad’s phone, over and over.

“Well, at least someone is happy,” Maryam said dryly. Then she caught herself.

Alhamdulillah, she said. Praise be to God. At least they weren’t in Syria.

“We’re here,” Maryam said softly. “We’re here.” ●

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