Life, Love, and Fear: The Joy and Toll of Caring for a Family Member With an Intellectual or Developmental Disability

Noah Hudson slapped his tiny hands on his parents’ kitchen table, pushed aside a half-eaten banana pancake, and tried to wriggle free from his highchair. His mother held on to him with one hand while steadying the computer screen she was looking at with the other. “So sorry,” Sarah Hudson told the occupational therapist on the video call. “One sec….” Noah flung his spoon to the floor and let out a cheerful squeal. Sarah gave an exhausted half-laugh. “You know, he can be a handful,” she said of her 22-month-old son, who was born with a developmental disability.

It was early March, and morning sunlight filtered through the family room windows of the Hudsons’ rented Central Park home. Noah’s blue therapy mat was folded in one corner of the room; books written in Braille were on the kitchen countertop, next to a calendar Sarah filled with reminders for doctor visits and therapy sessions. A miniature backpack, with Noah’s feeding pump packed inside, leaned against a wall.

Born six weeks premature, Noah had missed most of the cognitive and physical benchmarks for children his age. His team of doctors—which had grown exponentially since his first weeks in the neonatal intensive care unit at Children’s Hospital Colorado—inundated his parents’ email inboxes with unpronounceable diagnoses. Noah lacked a right eye and much of his right ear and right nostril. He’d already undergone surgeries to fix a cleft palate and cleft lip; another would eventually be needed to increase the size of one of his orbital bones. A scan of his skull revealed an open canal that ran from his nasal cavity to his brain. His hypothalamus and pituitary glands—essential for regulating everything from organ function to heart rate—were “irregular,” according to one specialist. His one, blue eye had at least some vision, though it could take another year before doctors fully understood what Noah was seeing.

Spencer, Noah’s dad, 34, was at work as an account executive for an IT company, which meant Sarah, 33, would handle much of Noah’s day on her own. Today, there’d be a video call, an at-home therapy session, an in-office therapy session, at least six feeding tube sessions, and—Sarah hoped—two naps.

Noah is one of an estimated 7.4 million Americans living with intellectual and developmental disabilities. Known colloquially as IDDs, these disabilities can include a broad range of conditions such as cerebral palsy, Down syndrome, and autism spectrum disorder. Roughly 5,700 Colorado toddlers and infants have a diagnosed IDD, a number that has grown over recent years as the state’s population has increased. Once considered a marker for early death in the most serious cases, today people with IDDs are living longer lives. Adults with Down syndrome, for example, live nearly three times longer than they did three generations ago.

That longevity has delivered untold joyous moments, ones that were rare until recently: school graduations, first jobs and paychecks, and memories spun from being able to spend time with a loved one. Longevity has also created extraordinary challenges, most often revolving around finances and uncertainties surrounding the future. It’s more likely these days that someone with an IDD will outlive their parents, which has put pressure on familial caregivers to put in place supports that will last long after they’re gone.

Parents of those with IDDs—both young children and those who’ve grown into adults—swap stories on social media message boards dedicated to their worries and frustrations. Plans for adult-oriented group homes have proliferated, as have demands among parents who’ve advocated to end Colorado’s waitlists for IDD services and for a system that better integrates those with IDDs into society.

On that morning, though, Sarah couldn’t think much beyond Noah’s breakfast. “He did 15 minutes of eating, but he’s also still getting pumped through the stomach right now,” she told the therapist on the computer screen. “We’re supposed to cut those back and replace that with other food.”

“I think you’re sticking to the goals for the moment, and that’s good,” the therapist said. “Let’s get those calories any way we can.”

Noah squealed again. Sarah unbuckled her boy from his highchair and stood him up on the wooden floor. His rubber feeding tube peeked out from under his red shirt. Noah looked up at his three-year-old sister, Kinsley, who was sitting at the table and watching a princess cartoon on the family’s iPad. Noah banged on a table leg and let out a playful baby growl. His sister eyed him suspiciously.

Up to this point, Noah’s life had been an unending cycle of specialists, therapists, and hospital rooms. It’s something his parents never could have imagined when Sarah learned she was pregnant in early 2021. Months later, at the 25-week checkup, a scan showed that Noah’s face was malformed and that his brain and lungs weren’t developing properly.

Today, Sarah had taken to calling Noah her “beautiful boy.” Playful and full of energy, he always demanded to be the center of attention. Wherever he went, his high-pitched trill attracted smiles and laughs. He could crawl and walk and do a toddler sprint if he needed to chase down his sister or the family’s aging bulldog, Sandlot. On their best days, Sarah and Spencer could envision their son getting a driver’s license or dancing at his high school prom.

They knew, however, that these first years were the honeymoon period for care, when health professionals were at their most optimistic and helpful. It seemed every support was at their fingertips. Almost immediately after his birth, Noah was paired with a Denver clinic for blind and visually impaired children. Another company provided free books written in Braille. Therapists loved coming over for in-home visits. Still, Sarah never envisioned spending mornings talking to anybody about how to get her kid to swallow a single, half-dollar-size pancake.

“Splash milk on it if you need to,” the therapist on the screen said. Sarah talked about weight checks and pediatrician visits and a meeting with a gastroenterology specialist in a couple of months. As Sarah spoke, Noah found a stainless steel bowl and pounded it on the floor. He banged on a kitchen wall and tried to climb the stairs. Kinsley asked for her princess doll.

“In a minute, honey,” Sarah said.

The therapist continued talking. Sarah stifled a yawn, and Noah returned to the table. His mother bent down to unwrap his feeding tube, which he’d tangled around one of the table’s legs. When the meeting finally ended a few minutes later, Sarah closed the laptop and exhaled.

For decades, IDD children and adults were warehoused in state facilities, locked away in wards and largely forgotten by society. One of the most infamous institutions was Willowbrook State School in New York. In 1972, graphic accounts of filthy, “subhuman” conditions made headlines and led state and federal authorities to investigate. The school was closed in 1987.

Three years after the Willowbrook exposés, Congress passed the Individuals with Disabilities Education Act. IDEA, as it’s known, was landmark legislation that changed IDD education nationwide. Spawned in part by the civil rights movement of the 1950s and ’60s, the law mandated that public schools integrate students with disabilities into classrooms and develop a system of early support programs. Schools nationwide created classrooms and entire departments dedicated to special education. The concept of mainstreaming—of pushing some IDD children into standard classrooms, electives, and extracurriculars like art, music, and sports—became common. Soon, those children would begin to step out of the educational shadows and become visible in school hallways and at lunchroom tables across America.

Leana Viscardi had long been one of those students. One day this past spring, Leana opened the paper bag on the table in front of her and carefully took out its contents: milk and fruit-flavored cereal. She grabbed a bowl and filled it, then pulled out a plastic spoon. She ate in silence as her classroom came to life around her.

Kristy Bates, Leana’s special education teacher at Denver’s George Washington High School, watched the young woman and smiled. Bates called across the room to her paraprofessional, a young man named Phillip Dilosa.

“Can you guess whose birthday it is today?” Bates asked her co-worker with a wink.

Dilosa feigned ignorance. “I don’t know,” the 22-year-old said and then paused. “Is it Leana’s?”

Bates nodded her head. “Oh, my gosh!” Dilosa yelped. “Happy birthday! Leana, it’s a special day for you!”

Leana gave a sly side-eye.

“Leana, I hope this is a great day for you!” Bates said.

Diagnosed as being on the autism spectrum and nonverbal, Leana was turning 20. While most young adults her age were having late-night talks with college roommates or embarking on their first real jobs, Leana was in her special education classroom, preparing for her day. As part of IDEA, Leana was constitutionally guaranteed a “free appropriate public education” for one more year. By May 2024, she would officially graduate George Washington High with a diploma and then age out of the support system that had helped her through young adulthood.

The idea of losing their daughter’s primary form of assistance was concerning to her parents, Rolanda and Vittorio Viscardi, who’d come to Denver from Michigan five years earlier after spending Leana’s early life in Villasanta, Italy, near Vittorio’s hometown of Monza. Their daughter’s life was on the cusp of a tremendous shake-up. “It’s always on my mind,” Rolanda, 51, said earlier that morning outside the family’s apartment, as she watched her daughter head toward the school bus’ open doors. “What happens to Leana when one of the best things in her life gets taken away and she doesn’t understand why?”

While other students were busy with calculus and Shakespeare, Leana was learning skills and social cues that would help her adapt to life without a safety net. High school had also given her parents an eight-hour break, five days a week, for nine months a year while they pursued goals for their family. Vittorio was working toward a master’s degree in political science at the University of Colorado Denver and hoped to have a full-time job soon. Rolanda worked with adults living with disabilities. The idea that Rolanda and Vittorio would have to find daycare for their adult daughter—or possibly give up a job to stay home with Leana—was frightening to both of them.

Leana’s classroom was warm and friendly, with a wall of windows at the back and an enormous television screen where classwork was displayed up front. There was a whiteboard on one wall, with words such as “big” and “can” and “see” and “want” stuck to it. On another wall were cutouts with students’ names and photos. Below Leana’s photo were several quotes. “I like to watch cooking and baking shows.” “I like to eat my papa’s Italian cooking.” “I love listening to music.”

Dressed in a black T-shirt with a tiger print on it and seafoam-colored sweatpants, Leana sat quietly at a table in the middle of her classroom and stared at an Inclusion Week slideshow her teacher loaded onto the big screen. “Inclusion is accepting people as equals,” Bates read from one of the slides, “and ensuring that they have access to the same services and opportunities as everyone else.” One of the students flipped over a table, and Bates stopped briefly to set it on its legs. Leana watched her teacher return to the front of the class and smiled.

“Leana’s an entirely different person from when she first arrived here,” Bates said after her nine students had finished a lesson in which she’d given them a dollar amount for several items and asked if they had enough money to cover the cost. Leana once had been shy and lacked confidence. Now, she ate with the rest of the school at lunchtime. She walked the basketball court three days a week with a friend from her integrated physical education class. She moved assuredly among the high school’s hallways, exchanging high-fives with students as she blazed past with her determined walk. “What I’ve seen from Leana is pretty amazing,” Bates said. “She went from a girl who would basically only communicate with her family to a young woman who seems totally at ease with herself.”

On this spring day, Leana celebrated her birthday inside the gymnasium with her integrated PE class. Her father had made two cakes—Italian-style Easter cake and Irish potato, Leana’s two favorites—and a teacher placed them on a folding table near the doorway. The class sang “Happy Birthday” before the students ate. Leana stood in the middle of the group and spun around slowly to see her classmates. Everyone clapped.

One of Leana’s friends, a senior named Mykalah Trimm, offered her hand to Leana. “Want some cake, buddy?” the 18-year-old asked. Leana nodded. Soon, everyone was splayed on the wooden basketball court, eating and talking and hanging out. Leana was near the middle. She ate the Italian treat first, then the Irish potato cake. Mykalah peppered her with questions.

“Do you want to dance for your birthday? You wanna bust a move, buddy?”

“That’s really good cake, isn’t it?”

“You feel happy today?”

When Leana smiled, Mykalah gave a thumbs-up with her right hand. Leana pointed at it with her index finger and touched it.

“Oh, my gosh,” Mykalah said and laughed. “Leana, did you like that cake?” She gave the thumbs-up again. Leana touched Mykalah’s thumb again. “Do you want more?” Thumbs-up. Touch.

Mykalah went to the line where the physical education teacher was dishing out slices. She told the teacher about the thumb touches. The teenager was beaming.

“How cool is that?” Mykalah said. She looked back at Leana and waved. “Leana’s great,” Mykalah said to her teacher. “I think we finally get each other.”

Alan Beals stood near the doorway of his childhood bedroom as his service dog dozed on the floor next to him. Alan was staring at a wide piece of posterboard taped to the wall. Written in broad strokes in blue and green marker by his sister a few years earlier, the list was a reminder of the many gifts Alan had to offer the world.

He marveled at the sign, as Alan often did when he stayed the night at his parents’ house, in Centennial. On it was written “gifts of the head” (the Eagle Scout project Alan completed a few years ago); “gifts of the heart” (Alan’s many family members and friends); and “gifts of the hands” (Alan’s volunteer job with Lions Clubs International sorting eyeglasses for the poor). “I have a lot of gifts,” the 27-year-old with Down syndrome said. Alan adjusted the device strapped to his right ankle, which allowed the Arapahoe Country Sheriff’s office to track his whereabouts in an emergency, then smoothed a sleeve on his favorite plaid shirt and walked downstairs.

Two chairs and an open laptop were waiting for him. “Big day,” his mother, Darlene Beals, said to Alan. The pair had a virtual appointment with Alan’s program approved service agency (PASA), which facilitated state payments for assistance, and with a caseworker from the Colorado Department of Health Care Policy & Financing (CDHCPF). Together, Darlene hoped, they’d decide whether Alan could qualify for the emergency service waiver his parents imagined would change their lives forever.

The video chat popped to life. Darlene and Alan sat close, their faces taking up the computer’s screen.

“Let’s do this,” Darlene said to her son.

“Let’s do this,” Alan responded.

It was the third time in 12 months that Darlene had tried to secure a developmental disabilities (DD) waiver for Alan. In its most basic form, a DD waiver is the most comprehensive assistance the state of Colorado offers people like her son. Within the IDD community, the DD waiver is the proverbial golden ticket that not only opens up a host of services but also unlocks a lifetime of security, namely home-based care that can provide parents the certainty that their child will be supported indefinitely.

Some of Alan’s assistance had been covered by his supported living services (SLS) waiver, which is funded through the state’s Medicaid program and typically averages $15,000 a year per recipient. For Alan, the SLS waiver covered his job coach and some of the costs associated with his roommate, who helped Darlene with the day-to-day management of her son’s life.

More than 7,800 Coloradans today receive a DD waiver that offers round-the-clock help, according to the CDHCPF, an increase of roughly 80 percent from just a decade ago. At the same time, nearly 3,000 Coloradans—including Alan—are still awaiting their waivers. CDHCPF officials had talked often about shrinking the DD waitlist and increasing enrollments. (The average wait in 2014 was 15 years, but that has shrunk to about eight, in large part due to state earmarks that included more than $15 million in 2021 and moved roughly 700 people into DD waiver care.) For families like Alan’s, help couldn’t come fast enough. The IDD message boards Darlene frequented still had stories of parents whose children had been waiting decades for their waivers. Every story she read felt like her own: the constant battle for resources, worries about money and supports, and the fear and uncertainty that came with being an aging parent of an equally aging child with a disability.

Over nearly three decades, Darlene put herself in charge of virtually every part of her son’s world—from his education to the job coaching he received to selecting Alan’s roommate. She could spend hours talking with Alan about Disney cruises and NASA Space Camp and his wedding (Maroon 5’s “Sugar” definitely would be on the playlist). Alan had big dreams, which his mother was always willing to facilitate. He had a certificate for taking classes at Metropolitan State University of Denver and a blue belt in karate, and he’d earned his Eagle Scout rank. In nearly every way, Darlene had found no greater calling in life than ushering Alan through his.

But she was also exhausted. Fifty-nine, with two other adult children living in faraway states, plus a semiretired husband, Darlene had reached a point where she was finally ready to let go. She sometimes found herself daydreaming about long, hot baths without worrying whether Alan was turning on the oven or opening the front door to a stranger. She and her husband, 58-year-old Will, sometimes wondered what their son’s life would look like if they were to suddenly die. Certainly, one of their other children would step in, but the pair was reluctant to push the demands of Alan’s life onto them. This was the life that had been handed to them. For better or worse, they’d made it work.

Despite the two failed tries at her son’s waiver, Darlene now felt like an expert. With the help of the CDHCPF caseworker, Darlene and Alan would answer a series of questions to determine Alan’s level of independence: Could he do laundry on his own? Did he know how to dial 911? Could he cook a meal? The verbal test, which lasted about an hour, would later be scored to determine whether Alan would qualify.

In the most extreme cases—when an adult was blind and deaf, for example, or needed regular tube feedings—the disability was obvious. Alan was different. He still had tremendous needs, but he’d always been a go-getter, the amiable kid turned respectful man who liked walking around his apartment in his Eagle Scout uniform and who’d had a warehouse job at Buckley Air Force Base before the pandemic.

On Darlene’s message boards and in the support groups she attended, every parent of an IDD child knew DD waivers were given to those who were deemed most vulnerable. In Alan’s case, that meant tossing aside the independence he’d achieved over his 27 years—the middle school basketball games, the scouting trips, the therapy work that Darlene made sure her son never missed.

The caseworker talked first. Alan needs supervision 24/7?

“Yes,” Alan said before his mother could say anything.

Instead of talking about Alan’s love of cooking, Darlene explained how her son once nearly set the kitchen on fire. Instead of discussing his love of movies, Darlene talked about when Alan thought an intruder was in the house and Spider-Man could help get him out.

When the conversation was over and the computer was off, Darlene turned to Alan. “I think that went well,” she said.

“Yeah, I think it went well,” Alan said.

A month later, the family got the news via a Zoom call with Alan’s PASA: By late spring, Alan finally would have his DD waiver. His parents were excited but apprehensive. “You wonder what’s going to go wrong with the system, because you know it will,” Darlene said. In the coming weeks, she and Will would be proven right. There would be issues with paperwork and the signatures. The DD waiver was pushed to May, then to sometime later this summer. Darlene was frustrated, but she’d given up being mad a long time ago. And she had hope: She thought about the waiver—whenever it would come—and the freedom it would give her to let her son live his life without her constant presence, like any young man would want.

Kristen Adams watched her brother from a chair a few feet away and begged him to speak. “C’mon, buddy,” she said. “Please, for me?” The two of them sat inside a white-tiled room in Denver with a speech pathologist named Aleaza Goldberg. The clock on the wall above them ticked away.

Goldberg set a plastic cash register in front of Kevin, who is 46 and has Down syndrome. Dressed all in black, with graying whiskers and a beanie atop his head, Kevin looked at the blue and red toy. He frowned. Goldberg had promised to teach him how to use a register as part of his training to eventually get a job. Kevin hoped it would be at Olive Garden, his favorite restaurant.

Instead, he was staring at this piece of plastic. Kristen, 53, leaned into her brother. “Hey, Kevin?” she said. “I know this looks like a toy, but I need you to do this. If you want to work at Olive Garden, you need to know what this stuff looks like.” Her brother stared at his Nikes.

This was how it had gone for the past few months; Kristen pushing and Kevin pushing back harder. She’d moved her brother from New Mexico to Colorado nearly four years earlier, after their parents had died 18 months apart. Kevin lost nearly every support and person in his life in the move. He no longer slept in the twin bed his mother bought for him when he was a teenager; he no longer ate dinner in front of the television next to his father.

He got new doctors and therapists. He and Kristen shared a rented ranch-style house with a small yard that sat along a busy street in Englewood. They played with Kristen’s 11-year-old, mixed-breed dog, Rosie. When Kristen was feeling spontaneous, she’d take Kevin to a bar a few blocks away from her house and they’d sit together with a vodka tonic (for her) and a Sprite (for him). She smiled, and wiped away tears, when her brother played the guitar she’d bought him for music therapy. She would laugh at his mishaps, like accidentally dumping an entire container of Parmesan cheese on his spaghetti at dinner. Kristen loved hearing Kevin’s confident voice, the one his therapist told him should come from deep inside his belly, the voice that told Kristen, “Hello!” and “Let’s go!”

Precise data on the number of siblings across the country who serve as primary caregivers doesn’t exist. The best estimate comes from a 2012 survey done by Easterseals, a nonprofit that advocates for those with disabilities, that showed roughly one in five American adults with special needs was cared for by a brother or sister. In other words, there are more than a million Kristens throughout the country.

“I need to know what’s going on with you,” Kristen pleaded with her brother as they sat in silence inside Goldberg’s room. Kevin still wouldn’t touch the plastic cash register. Kristen slid her chair closer. “Please,” she said, “let me in.”

Kevin mumbled a few words. “I’m sorry, but we can’t hear you,” Goldberg, the speech pathologist, said. Kevin flattened his right hand and pushed it out from his waist. The message was clear: Stop.

Kristen worked as a therapist, primarily with adults, and running Kevin’s life felt like a second full-time job. What was good for Kevin (music therapy, for instance) seldom left room for Kristen’s modest desires (to work, to get a few moments alone to walk Rosie, to go on a date). Kristen handled nearly everything in Kevin’s life, from the time he woke up and she shuttled him into his morning shower, to the moment she closed his bedroom door at night.

“I’m trying to hang on, but it’s getting harder,” she told Goldberg. Kristen went through a list of challenges she’d experienced over the previous few months: In-home therapists were constantly moving to better-paying jobs, and each switch meant another search for services, another trust-building acclimation period for Kevin. Kristen secured what’s known as an emergency DD waiver from the state—hoping it would free her to work without worrying about her brother—but three support homes had fallen through.

“I build all this up, and it gets taken away from him,” she told Goldberg. “The worst part is he thinks it’s his fault.”

“Oh, Kevin,” Goldberg said.

Kristen had started noticing the mood swings a couple of months before. Kevin was lethargic much of the time. “He’d sleep until noon if I allowed it,” Kristen told Goldberg. Kevin rarely spoke above a whisper these days, and the sudden change scared and angered his sister. Kristen was frustrated with her brother; she was mad at herself. What was she doing wrong? she wondered. Kristen read academic papers on adults with Down syndrome and learned that patients sometimes developed something akin to early onset Alzheimer’s. Personalities rapidly devolved. Moods changed without notice. Was this happening to Kevin? she worried.

Goldberg touched the plastic register. “I know this looks baby-ish, Kevin,” she began. Goldberg looked at Kristen.

“I have to be honest with you,” she said. Goldberg had seen the moodiness, too, saw the ways Kevin pulled back. “I don’t think Kevin and I are connecting,” she told Kristen.

The previous week, Goldberg and Kevin had been using a computerized program that allowed him to speak through a hand-held device. The pair was sorting through words—“happy,” “sad,” “frustrated”—and people and places that had been uploaded particularly for Kevin. As he flipped through his digital pages, Kevin came across photos of his parents. He touched the button for “Mom” and then for “Dad.” He started to cry. “I think there’s a lot in there, a lot of hurt,” Goldberg said. “Just like with a lot of siblings, I think there are probably some things you guys need to work out.”

Kristen covered her face. “Ahhhh, Jesus.”

She thought about what it would mean to find another speech pathologist, to get a family therapist, to start over again. Kristen couldn’t afford to take even more time away from her job to search for help, to change schedules, to drive to a new place, to meet new people, to get Kevin comfortable.

Kristen closed her eyes. Tears began to stream down her face. She turned to her brother again. “God, Kevin!” she finally said. “Look at me!”

She recoiled at the sound of her voice. “Kevin, are you worried? Are you sad?” Kristen asked. She put a hand on her brother’s shoulder, but he pulled away. “Please, Kevin,” Kristen pleaded. “I feel frustrated. Kevin, I’m sad. I’m sorry. My heart is sad, too. I’m so, so sorry.”

She reached for her brother’s device and began typing. “I… AM… SORRY.” She pressed sorry over and over.

Her brother glanced up from his sneakers and saw his sister’s tears. All at once, Kevin’s face twisted in pain. He slumped in his chair and began to cry.

A few months later, things had started to look up for Kevin and his sister: Kristen accepted a part-time remote job at a school district in New Mexico. And she was able to, finally, formally become Kevin’s family care provider, which meant she’d be paid via the DD waiver for taking care of Kevin. “Being a family care provider is a lot of work,” Kristen said this past June. “But if you take it on, you will discover a wonderful, amazing, challenging, rewarding, beautiful world.”

Noah climbed atop a wide drum on the floor inside a classroom at the Anchor Center for Blind Children in Denver. He pounded on the taut drumhead as a half-dozen infants snuggled in their parents’ arms. “Look at Noah go!” the therapist, who was playing an acoustic guitar, said.

His mother, Sarah, sat next to a man holding his son against his chest. A woman sitting in the back corner rocked her baby quietly while her husband stood next to her. Tired, shell-shocked looks covered both their faces. The therapist with the guitar started playing “The Wheels on the Bus.” Noah banged away on the drum.

Sarah was the veteran here. She was past those initial worries, beyond the all-consuming desperation that once had left her sleepless. She assumed these parents had spent weeks in the NICU, just like her and Spencer. She assumed that they had email inboxes filled with unpronounceable, frightening terms, too—that their kids had undergone surgeries and needed teams of doctors, just like Noah.

She was practicing Braille with Noah nearly every day now, and she and Spencer were learning American Sign Language with their son. Noah could already make the family’s sign for his sister, Kinsley: an ASL “K” on the forehead followed by a tiny twist of the wrist, to signify the little girl’s curly blond hair.

Noah crawled closer to the therapist and plucked a guitar string. Everyone laughed.

Earlier, Sarah had asked an Anchor Center therapist when Noah might move to the next group at the center. His pediatrician, she explained, said Noah was about six months behind similarly aged children when it came to language and cognition. Sarah didn’t want her son falling behind any more than he already was.

“Maybe he should be around some of the older kids?” Sarah asked. If she could somehow close her son’s cognitive gap, even just a little, she was going to push for it. “Like, can we be doing more?” Sarah added.

“I think you’re doing a lot right now,” the therapist assured her.

Back home later that day, Sarah was corralling the kids when Spencer arrived home for lunch. He kissed his wife and the kids, then leaned against a kitchen countertop to listen to Sarah’s rundown of the day so far. “I think Noah might be left-handed,” Sarah said. “And he gave the [ASL] sign for green.”

“Hey, that’s pretty cool,” Spencer said, picking his son off the ground. “A lefty, huh?”

A couple of weeks before, Kinsley had asked about her brother’s missing eye and his misshapen right ear, which looks something like a miniature cauliflower. Sarah explained that everyone has differences, that some people have blue eyes and some people have brown eyes; that some people have smooth ears and some have bumpy ones. “Kinsley’s like a little tester for us,” Spencer said. “What do we say to other kids when they have questions?” No one’s bothered to ask so far. “We’re just gonna roll with it,” Sarah said.

She took Noah upstairs for a nap. Kinsley wandered to another room with one of the family’s bulldogs. When Sarah returned to the kitchen, she was finally able to share a rare moment of peace with Spencer. They talked about the neighborhood park and whether they might order dinner in that night. Eventually, as it usually did, the conversation turned to their son.

A precise diagnosis for Noah had been elusive. As he learns to communicate better—whether through his own words or through signing—Noah will be able to explain what he’s seeing and hearing. Until then, his parents will act like detectives, looking for clues about their youngest child.

“We have to believe everything will come with time, don’t you think?” Sarah asked.

“Some days I wonder, Are we doing the right things for him?” Spencer said. “Are we seeing the right doctors? Is there more we could do? But then, some days, I see real progress. You and I can’t change this. We’ve got to support Noah the best we can.”

Sarah nodded. She was holding her calendar, the one with her son’s appointments, and flipping through the months. “We still have so much to learn,” she said. “We’re barely scratching the surface of what we’ll know. This is just the beginning.”