For a whole day after a seizure, Emily paces. Her current caregiver—let’s call her Stella—will stay close by, making sure she doesn’t fall, watching for the first signs of another one. Around and around the huge house they walk, Emily in a T-shirt and leggings, barefoot, her dark hair disheveled. She’s nineteen but looks much younger. In one hand she clutches a squishy yellow ball, in the other a pink plastic bottle. Over and over they make the circuit. Living room, kitchen, foyer, den. Emily’s dark eyes fasten on her father, Ray, and her mother, Arsineh, whenever she passes them. She is an anxious bird circling the only place that feels safe, unable to settle, restless and driven. She will walk this way for miles. She will walk all night, and someone will walk beside her—Stella or Ray or Arsineh.
Sometimes Ray pries the objects out of her hands—the ball, the bottle, lip balm, an empty asthma inhaler—but her hands keep clutching, as if the gesture is stuck in her brain. Ray hates to see it. He’ll take away her objects hours before bedtime and still her hands will stay clenched, until he lies down beside her in bed and holds her bruised fingers in his. Her hands relax only in sleep. But there will be no sleep tonight.
Emily Mirzabegian suffers from tonic-clonic seizures, the big dramatic ones you see in movies: a violent shaking followed by a full-body stiffening. Emily has one every week or so, more often during a full moon. For a day or two afterward, she will refuse food and toys and videos. She will seem to see nothing, feel nothing, wanting only to walk and walk and walk. The only way to keep her from walking is to put her in the car and drive. On these days and nights Ray and Arsineh take turns cruising the freeways around Los Angeles, their daughter watchful in the passenger seat.
Emily had her first seizure at four months old, shortly after a round of vaccinations—uncommon but not unheard of. A few months later, after another set of shots, she had a seizure that wouldn’t stop and wound up intubated in the pediatric ICU. From then on she had daily seizures, a few big ones and hundreds of smaller ones, even with phenobarbital and other heavy-duty medications in her system. Still, she kept growing, learning, developing. By age six she was bilingual in English and Armenian. One day she stopped talking altogether—it was as if someone had pushed the mute button. As the seizures continued, she lost the ability to read and write, developed social delays, suffered memory loss. She became a shell of the girl she’d once been.
Her parents tried everything: medications, a ketogenic diet, activated charcoal. Nothing helped. “Every time Emily was having a seizure we were thinking about death,” says Ray. “Looking down on the floor and death has covered this child of yours because nothing is helping and the medical community has given up.”
Ray began to look for other solutions. In 2013, when Emily was nine, he came across Sanjay Gupta’s documentary Weed, which followed Charlotte Figi, a five-year-old with a severe and incurable form of epilepsy known as Dravet syndrome. Charlotte, like Emily at the time, had hundreds of seizures a week, transforming from a bright, energetic child to nearly catatonic. When she started taking cannabis, though, her seizures diminished to almost none. She began walking and talking again. Charlotte died when she was thirteen, during the pandemic. But before that she’d begun to live more fully.
The day after he saw the documentary, Ray reached out to the Stanleys, a family of seven brothers who’d opened a medical marijuana dispensary in Denver in 2008. The Stanley brothers had developed the specific tincture that treated Charlotte’s seizures—an oil rich in cannabidiol, or CBD, extracted from plants and purified—and had begun marketing it as Charlotte’s Web. After the documentary aired, parents from around the world flocked to Colorado to get the medication. Ray couldn’t bring himself to do it. Crossing state lines with cannabis was (and still is) illegal. He’d always been a by-the-books kind of guy; growing up Armenian Christian in Muslim Iran will make you nervous about breaking the law.
The legal landscape around cannabis is murky and contradictory. The Controlled Substances Act of 1970 classified cannabis on a federal level as a Schedule 1 substance, meaning it has “no currently accepted medical use and a high potential for abuse.” Beginning in the mid-1990s, however, individual states began legalizing cannabis for medical use, which has led to medical marijuana becoming legal for adults in forty states. In most of those states, people under twenty-one are also able to use it, though only under very specific conditions. Despite this, even where medical marijuana is legal, parents who use it to treat their children still take big risks. Registering for medical cards on behalf of their kids should, in most cases, protect them from state prosecution, but they can still get into trouble based on legal loopholes, the discretion given to child protective services and the courts, overlapping contradictions between federal and state laws, and a general lack of clarity around all of these issues.
One thing is clear: It’s still a crime to transport cannabis across state lines. For a while, Ray drove to medical dispensaries in California—from San Francisco to San Diego—buying bottles of oils and tinctures with crude handwritten labels. Medical cannabis was legal in California at the time, but getting good medical advice was impossible. “We would walk into a head shop asking the stoned budtender what to give our child, who’s having a hundred seizures a day,” Ray said. “And 95 percent of the time we would come back with shit. Everything was failure for Emily.”
Eventually he reconnected with the Stanley brothers and flew to Denver to buy some Charlotte’s Web. He then drove the fifteen hours back to Los Angeles in a state of high anxiety, terrified that he might be arrested for crossing state lines with marijuana. But the risks—fines, jail time, the possibility of losing Emily—were all worth it if there was a chance that cannabis could make her better.
And it did. The first time Ray gave Emily the Charlotte’s Web, he didn’t realize he was supposed to dilute it with olive oil. “Emily got a bit high and happy and hungry,” he says. After that, Joel Stanley helped him figure out the right dose and dilution for Emily’s weight.
From the start, cannabis worked. On the cannabis oil, Emily’s seizures dropped by about 70 percent. Four years later, Ray and Arsineh had weaned her off all her neurological medications—more than a dozen prescriptions. It took years to go through what Ray describes as “withdrawal-palooza,” weaning Emily off clonazepam, Depakote, Keppra, Topamax, and other pharmaceuticals, one at a time. “We had a little kid going through full-on rehab like an alcoholic,” he says. “Tremors and vomiting and not sleeping and screaming. But her quality of life improved by 100 percent.” By age thirteen, Emily was taking only cannabis, and was having only one or two seizures a week. It was, for a while, almost miraculous.
When he talks about the neuro meds, Ray’s voice pitches up and his shoulders tense. He’s convinced it was the medications, rather than the seizures, that damaged Emily’s brain irrevocably. One day at his office, he pulls up a video on his phone of one of the families he’s recently worked with (he consults with many parents on treatment strategies for their children). In the video, a five-year-old is strapped into a wheelchair, drooling, eyes closed, dazed from the sedatives he’d been prescribed. And yet, Ray says, the boy is still having twenty seizures a day. For many children with seizure disorders, neurological medications can be largely ineffective; even worse, their damaging side effects can be profound, especially on a child’s developing brain.
Many parents who use cannabis do what Ray calls “playing the game.” They fill one pharmaceutical prescription a month—for Keppra, say, or Ativan—then put the medicine away. Sometimes they’ll give their child the medication for a week or two so it shows up on blood draws, to show their doctor that they are, in fact, treating the child with something.
Child protective services can get involved, too. Ray says he has worked with parents whose children have been taken away by the judicial system because they were being given cannabis—he has in fact testified for families in court, trying to convey the depth of their despair, explaining that the reason a parent treats their child with cannabis isn’t because they’re irresponsible, but because conventional medicine simply cannot help them.
THE MIRZABEGIAN FAMILY
Cannabis has been used as medicine for thousands of years. Assyrian and Sumerian texts from the second millennium BCE refer to azallu as a treatment for “hand of ghost,” most likely epilepsy. It was prescribed for joint pain, constipation, malaria, and migraines in ancient China and Egypt. British doctors (including Queen Victoria’s personal physician) wrote case studies about relieving seizures in children with “Indian hemp.”
In the US, cannabis showed up in many patent medicines throughout the nineteenth century and into the twentieth. But public perceptions began to shift in the 1930s, thanks in large part to Harry Anslinger, the first commissioner of the Federal Bureau of Narcotics. Anslinger kicked off a successful propaganda campaign characterizing cannabis as a drug that “makes darkies think they’re as good as white men” and that caused “white women to seek sexual relations with Negroes, entertainers, and any others.”
Because cannabis is still classified as a Schedule 1 drug in the US, it’s been nearly impossible for researchers here to study it. Most of the cutting-edge work on it is being done in Israel, by researchers like Dedi Meiri, who heads the Laboratory of Cancer Biology and Cannabinoid Research at the Technion in Haifa, and Adi Aran, a pediatric neurologist at Shaare Zedek Medical Center in Jerusalem, whose research focuses on cannabis and autism spectrum disorder.
In the 1990s, Raphael Mechoulam, an Israeli organic chemist known as the father of cannabis research, began identifying the biological network of neurotransmitters known as the endocannabinoid system—endo because it’s inside the body rather than coming from outside. The human brain naturally produces several cannabis-like molecules, and the human body is full of cannabinoid receptors that influence everything from immune function to sleep to hunger. Cannabis plugs into those built-in receptors, mimicking the effects of the body’s own cannabinoids and producing an array of effects.
Mechoulam, who died in March 2023, was the first to isolate THC, the psychoactive element of the plant. He was one of the first to look at CBD’s effects on seizures, in a clinical study in Brazil in 1980. Forty-three years later, researchers such as Meiri and Aran are following in his footsteps. Both are what you might call cannabis skeptics. In other words they’re not stoners looking to rationalize their buzz, and they started from a position of questioning the “miraculous” effects of the plant.
Meiri maintains a database on the effects of different strains of cannabis on patients. He says initial studies support the use of cannabis with neurodegenerative diseases such as Alzheimer’s and multiple sclerosis, as well as for inflammatory bowel disease and epilepsy. Research in the 2010s suggested that cannabinoids can have an antitumor effect on cancer cells, triggering cell death and blocking metastasis. Meiri’s own lab recently discovered that cannabinoids can modulate important cell-signaling pathways in an aggressive form of leukemia, reducing the disease in mice. The lab is currently working on a treatment for humans.
The biggest push for cannabis research in Israel right now comes from parents of children with moderate to severe autism spectrum disorder—parents such as Abigail Dar, the mother of a thirty-year-old man with severe autism and epilepsy. Dar herself wasn’t keen on the idea of cannabis; her own sister was diagnosed with schizophrenia that was likely triggered by smoking too much hash in her teens. Dar went the traditional neurological route at first. “And we ended up with years of agony,” she says. In her experience, cannabis is far less dangerous than the antipsychotics that are routinely prescribed for kids as young as age four.
Much of the research so far has come in the form of observational studies using self-reported data, rather than randomized double-blinded studies—the gold standard of research. Observational studies are problematic for two reasons: They highlight correlations rather than causality, and they can’t account for the well-documented placebo effect. For instance, Aran’s 2023 study found that the more kids with autism understood why they were taking the cannabis, the better their responses to it, which suggests placebo is part of the mechanism of the drug.
Desperate parents don’t care why something works, though, as long as it does. Orit Stolar, a pediatric neurologist at Yitzhak Shamir Medical Center near Tel Aviv, also considers herself a cannabis skeptic. She’s especially wary about THC for kids, how that psychoactivity might affect developing brains. “But for some patients, it really makes a difference,” she says. Like for the parent who called to say their family had dinner together for the first time in ten years, thanks to cannabis. “These are little things that people like me who have neurotypical children, we don’t make a big deal of it,” says Stolar. “It’s something I expect. But if it wasn’t there, you can really appreciate it.”
The clinical term for what these parents are describing is “quality of life.” Parents of severely autistic children generally find their lives dominated by their children’s behaviors—sleep problems, anxiety, OCD, aggression, self-injury, restlessness. For them, a little relief goes a long way. “Many families with autism have a really hard time dealing with these kids,” acknowledges Aran. “And we don’t have good medications.”
His 2019 study found that children with autism have lower circulating endocannabinoid levels, which may help explain why cannabis improves their symptoms, though exact mechanisms are still unclear. “I think there is promise, and we can see it in the clinical practice,” he says. “Many kids improve in irritability. So I think something is there. Of course it should be assessed as in any other pharmacological treatment.” He thinks a few years from now there will be some kind of FDA-approved cannabis treatment for autism, as there is for epilepsy.
There is even evidence suggesting that cannabis can treat certain cancers—though its efficacy is far from proven. “If you look at the real stats on treatment with cannabis on cancer patients, unfortunately it’s not better than praying or putting a note in the Kotel [Western Wall],” says Meiri. “Which doesn’t mean that cannabis can’t fight cancer. But it’s far from promised.”
Or maybe we just don’t understand the mechanisms yet. Anahid Jewett, a professor and director of a tumor immunology lab at UCLA, studies natural killer cells, a type of white blood cell Jewett describes as the “first-line soldiers when it comes to the fight against cancer.” Her research suggests that some cannabinoids might help activate natural killer cells, strengthening immune function in cancer patients despite the treatments they go through.
One patient Jewett is working with is eleven-year-old Sophie Ryan, who was born with an incurable optical pathway glioma, a slow-growing brain tumor around the optic nerve that can cause blindness. Most children survive it, but they require ongoing treatment to keep the cancer in check. Sophie’s been through it all: biopsies and brain surgeries, ports and steroids and leg braces, vision loss, infusions, physical therapy for the hand and foot damaged in one of her surgeries.
Sophie’s parents, Tracy and Josh, started giving her cannabis when she was nine months old, and they’re convinced cannabis plays a role in why her brain tumor is currently shrinking. It might not even matter whether they’re right or wrong. Sophie is better, and that’s enough for now.
The world of cannabis is full of acronyms, abbreviations, and technical terminology that can be tough to understand. Here’s a guide to help you wade through the alphabet soup.
Cannabinoids: The 100+ different compounds found in cannabis.
CBD: Cannabidiol, a compound in cannabis and hemp. Often used to produce a calming effect.
CBG: Cannabigerol, one of the compounds in cannabis. Called the “mother of all cannabis” because other cannabinoids are made from the acidic version of CBG.
CBN: Cannabinol, one of the compounds in cannabis.
Endocannabinoid system: A system of neurotransmitters and receptors found in the human brain and body.
Terpene: A class of compounds found in cannabis. Different terpenes give off different scents. Often used in essential oils. Each strain has its own terpene profile, with different properties.
THC: Tetrahydrocannabinol, a psychoactive compound found in cannabis. Produces the high associated with cannabis.
THC-a: The acidic form of THC. Non-psychoactive.
Shannan and David Ajluni live in California’s Central Valley, three and a half hours north of Los Angeles. Their son Olly was diagnosed at nineteen months with a rare disease called central nervous system Langerhans cell histiocytosis, where excess immune cells build up in the body, creating tumors and damaging blood and tissue. By the time he was four years old, Olly was on four different neurological prescriptions but still having thirty seizures a day. He was in constant pain. He didn’t talk or walk, and mostly wouldn’t eat; Shannan was still breastfeeding him because it was one of the only ways he got any nutrition.
A friend sent Shannan a link to a YouTube video featuring Josh Stanley giving a TedX talk about Charlotte’s Web. Shannan wept while she watched. She had heard of cannabis for seizures but, being devoutly religious, refused to consider it. Now she wondered if she’d been depriving her son of something that could have changed his life. She watched the video again and again. Eventually she called her pediatrician, David Sine, and told him she wanted to try it.
Sine supports using medical cannabis for children in certain situations. Around 2015, he and his lawyer devised a medical marijuana surrogate letter, something parents could offer police and child protective services to show they weren’t heedlessly feeding their vulnerable children illegal drugs but rather were using cannabis for treatment under a doctor’s care. The letters gave families (and Sine) a little reassurance in a frankly dangerous situation. When Sine started this work, his practice helped around twenty families navigate the use of cannabis with their children. Two years later, he was helping nearly four hundred families.
“When I see a family for the very first time with a special needs kid that they’ve dealt with for a long time, the first thing I pick up on is complete desperation,” said Sine, who now focuses on pediatric palliative care. “The second thing is they’re looking for hope.”
By the time the Ajlunis brought home cannabis oil for Olly, he’d had two life-threatening seizures that had landed him in the hospital. Shannan and David prayed over the oil that night. She tasted a drop herself, expecting to get high because she’d never done weed before, but hoping that her experience would help her anticipate what might happen to Olly. She gagged on the taste, but nothing else happened except that she slept soundly that night.
The next day, as Olly recovered from yet another tonic-clonic seizure, Shannan squeezed a few drops of oil into a marshmallow, which Olly ate before falling asleep. The next morning, Olly asked to eat—and this was a kid who never wanted to eat. Shannan gave him a few bites of her breakfast, then a few more, then all of it. The day passed without a seizure—Olly’s first day without one in months.
Two months later, with Olly still seizure free, Shannan was diagnosed with breast cancer. She started taking cannabis oil for pain and nausea. Her son Joey, two years older than Olly, started on CBD for autism behaviors—hyperactivity, sleep, and what Joey described as a “loud brain.” (They later added THC to his formulation.) All three have seen big improvements in the quality of their daily lives, Olly most of all. Shannan thinks he wouldn’t be alive were it not for the cannabis. She can’t say for sure, of course, but she needs to believe in some kind of cause and effect.
THE AJLUNI FAMILY
All three of Jenni Mai’s sons have been diagnosed with autism spectrum disorder. In 2016, Mai, who lives with her husband and two of her sons in the desert outside of San Bernadino, California, connected with another SoCal mom, Rhonda Moeller, to found WPA4A—Whole Plant Access for Autism. They got their 501(c)(3) a few years later. About 31,000 families from all over the world use the site, which has become a clearinghouse for self-reported anecdotal data.
Given the paucity of actual clinical data on cannabis and kids, even anecdata can feel valuable. Mai says that doctors in Canada, for instance, where medical cannabis is legal on a federal level, still don’t understand how to prescribe CBD for autism. The families she works with tell her that doctors generally advise starting low and slow—which works with many medications, but not with CBD, which is biphasic: low doses are uplifting, higher doses are calming, much higher doses are uplifting. “We get Canadian families who are like, ‘My kid is bouncing off the walls on two drops,’” says Mai. “That’s just a general lack of information.”
And while parent-reported data about cannabis isn’t the same as clinical findings, many parents feel it offers better outcomes than other alternative therapies. Moeller recalls one family who mortgaged their house to pay for a hyperbaric chamber for their son. He still wound up in the ER, black and blue from self-harm. “What helped that family was cannabis,” she says. “And now, the kid doesn’t speak five languages or anything, but he’s stopped hitting himself and he’s doing better. It takes a lot of research and a lot of time, and doctors don’t help us, and it’s just—you’re on your own. It’s scary. And we don’t want parents to do that with cannabis. They don’t have to look on YouTube to find some stoner doing a video on how to do this and that, which makes parents feel a little icky.”
Mai says strains high in myrcene and linalool and low in pinene and limonene—all common terpenes—work best for her son Nate, who is largely nonverbal and struggles with aggression and self-harm. She buys flower from places that list terpene information; her last trip was to Planet 13 in Santa Ana, a dispensary an hour away that posts terpene profiles on placards. Then she decarboxylates it on a cookie sheet in the oven, letting the heat convert the THC-a to THC. She pulses the decarbed flower in a coffee grinder and pours the powder into gelatin capsules.
Many parents improvise part of their child’s regimen, either because they want to avoid a dispensary—choosing from glass jars with labels like Train Wreck, Mauie Wowie, and Hindu Kush doesn’t breed a lot of medical confidence—or to save money. Cannabis is expensive, and obviously isn’t covered by insurance.
Moeller, for instance, grows the marijuana plants herself (California residents are allowed to grow six mature or twelve immature plants medicinally). She harvests them, then marinates the flower in olive oil. The plant’s medicinal elements—the cannabinoids, terpenes, and other compounds—are all lipophilic, meaning they bind to fats. Moeller strains out the flower, leaving behind the cannabinoid-rich oil. No expertise in biochemistry needed, and much cheaper than buying from dispensaries.
Shannan Ajluni turned to what she calls “professional begging” as a way to offset the burden of cannabis treatment and other medical costs. Shannan spent $1,500 a month for cannabis treatment for the family, with Olly’s and Joey’s cannabis oil costing about $500 a month each. For a while, she funded it in part by working for a nonprofit called the Sacred Plant. She also created a Facebook page called Praying for Olly, which has 10,000 followers. (“I have no qualms being a Facebook whore,” she says.) Along the way, she learned which nonprofits to reach out to and how to get her family’s needs in front of them. She’d make her case: We need to go to Houston to see my son’s specialist, can you help me raise the money for the hotel? And for food while we’re there? And for a plane ticket? And they often did.
At the beginning of last year, though, the Ajlunis had to abandon cannabis treatment, in part because, even with all her fundraising, the cost was simply too high. Shannan’s been unable to work as an ASL interpreter since her double mastectomy because of nerve damage in her arm. David’s job brings in about $1,400 a month. Supplemental Security Income covers a lot, but it doesn’t stretch to cannabis.
Still other parents improvise for the sake of quality control. Ray Mirzabegian spent months acquiring plants, cloning them, and then learning how to grow his own and make oils and tinctures. Eventually he launched a working relationship with the Stanley brothers and began selling both Charlotte’s Web and his own line of products, Canniatric, to other parents.
“I wouldn’t mind buying a product and giving it to Emily,” he says. “But the stuff I’ve seen and experienced in grow rooms? I’m never going to give it to my child.” He’s seen plants dosed with rat poison and pesticides, which growers use to fight thrips, whiteflies, fungus gnats, and other cannabis pests—substances that would harm most anyone, but are especially dangerous for medically fragile kids.
Parents such as the Mirzabegians, the Ryans, the Ajlunis, and the Mais come to believe that their only choice is to take their children’s health into their own hands. “We don’t have any guidance,” says Mai. Doctors can’t give guidance because that could be seen as prescribing a Schedule 1 narcotic, which could cost them their licenses. This is why so many of the parents interviewed for this story have become peer advocates or consultants as well.
THE MAI FAMILY
“It’s not rocket science,” says Ray. “You don’t need to be a freaking doctor or nurse to help these families. People just need a guiding hand. Like, somebody hold my hand and let me know where to buy it, what to do, and how much to give. Basic questions.”
His daughter Emily’s cannabis story got complicated when she started puberty after four or five years on weed. “Hell broke loose, for us and for her,” Ray says. Seizures have long been known to worsen at certain points in the menstrual cycle. Emily’s seizures became uncontrollable in the week before her period. She became aggressive, angry, emotional. Sometimes she would simply scream. Ray tried tinkering with her dosage of the oil, but after years of taking cannabis Emily’s endocannabinoid system was saturated, and nothing helped. Ray has seen that happen to other kids, too. “It’s just like any other substance. Whatever you take every day for ten years, it’s not gonna work anymore,” he says.
Ray was desperate enough that he put Emily back on a benzodiazepine for a little while. He and Arsineh also signed Emily up for a clinical trial for a new pharmaceutical, driving hours round trip to San Diego twice a week. They started getting her Depo-Provera shots. But Emily’s menstrual cycle still triggers problematic seizures.
Watching his daughter suffer has left Ray bitter about the medical profession—not because doctors couldn’t fix Emily’s misfiring brain but because, as he sees it, they made it worse, then doubled down on the damage. “You go to a neurologist for epilepsy, their one and only focus is going to be stopping the seizures at any cost,” he says. “Any cost means some of these kids die because they can’t handle [the neuro meds]. Their brains shut down.” Every medication they’ve given Emily over the years—twenty different drugs and counting—has caused some kind of long-lasting negative effect, all except for cannabis. Ray believes that if he had found cannabis sooner she would still be talking, reading, writing—living.
Instead, she is simply alive. Underneath her anxiety, the squawking, the repetitive motions, you can see Emily’s essential gentleness, and something more: a sense of puzzlement, an existential bewilderment that cannot be articulated or assuaged. No one can know what it’s like to be Emily, of course. Ray thinks she understands as much as a five-year-old, but it’s hard to know because aside from a few words—jur, the Armenian word for water; ack-ack, which usually means walk—she’s unable to communicate. The word that comes to mind, watching her, is ruined.
Ruined not by the seizures, as devastating as they are, but by the treatments for them. If only the Mirzabegians had said no to the Keppra, the Topamax, the benzos, the phenobarbital. All of these suppress the central nervous system, and in the process of her treatment, Ray believes, they turned off something in Emily’s brain that needs to be turned back on. A kind of memory of functions, the brain remembering to give the body a signal to do something. She’d still have epilepsy and autism. She’d still have developmental delays and intellectual disabilities. But she might have a much better quality of life.
He doesn’t understand why doctors have been so resistant to trying cannabis with these kids. “How can you as a doctor see sixty of those kids in your office every day and they are suffering?” he fumes. “How can you completely discount hundreds if not thousands of parent testimonials? I’m not talking about one or five or ten or fifty. I’m talking about so many people now, across the world, talking about how this has improved their kids’ lives. How can you as head of Children’s Hospital or UCLA or any neurology department, how can you ignore that? What kind of a person are you?”
Of course, that’s not exactly how medical research works. But maybe Ray has a point.
On a warm night in June, Ray helps Emily get ready for bed. Arsineh is visiting family; Eliana, their younger daughter, is with her, so it’s just Ray and Emily at home. He takes her hand and leads her upstairs, changes her into pajamas, crooning to her in Armenian. He settles her down onto her king-size bed lined with furry bolsters and a custom net. Sometimes she panics in the night and stands up, or falls out of bed, or hurls herself across the room, which she did a few years ago, breaking one of her front teeth. She’s been sleeping in her own room for only a few years, after Ray set up a camera and alarm system he can access on his phone, with motion sensors that go off if Emily moves for more than a few seconds. He and Arsineh wake up a dozen times a night to the sound of the alarm, jumping out of bed to make sure Emily’s okay. But at least with this system they can sleep in their own bed.
There are moments when Emily’s condition breaks Ray down. But he bounces back, because if he doesn’t, he might get stuck there, and then who would take care of Emily and Eliana and Arsineh? He wishes Emily weren’t the way she is. But he’s also accepting of it because, in the end, he thinks she’s helping other families. Ray chooses to believe there’s a greater purpose to what they’ve gone through, because of who they’ve had to become in the years since Emily’s first seizure. What will happen to Emily when he and Arsineh die? That’s his biggest worry. For now, he chooses to believe there’s a reason for their suffering and their joy.
THE HOLT FAMILY