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Sarah Davis and Andy Davis

Sarah Davis and Andy Davis are mother and son. Sarah and Marcus Davis raised Andy at home after neonatal meningitis caused cerebral palsy, epilepsy, hearing loss, and cortical visual impairment. She learned his care while still a teenager and later brought her nursing training to their family life and her advocacy for his medical and educational access. Their relationship also includes Andy’s trust in her during pain or fear, Sarah’s recognition of his intellectual and emotional life, and their shared experience of racism and ableism in schools and healthcare.

Overview

Sarah opposed recommendations to institutionalize Andy, coordinated his care, and challenged the assumption that his disabilities reflected intellectual disability. She and Marcus withdrew him from Room 118 in 1995 after the school failed to educate or care for him safely, then helped establish the Matsuda-Davis Homeschool Cooperative. During a 1997 baclofen-toxicity crisis, Sarah’s accurate clinical assessment was disregarded until she called Ellen Matsuda, whose state credentials changed the emergency department’s response. At home, Andy’s “M-mama?” could mean a request for help, reassurance, or company; Sarah knew his symptoms and answered him with both clinical skill and affection.

Origins

Andrew Marcus Davis was born on October 8, 1977, when Sarah was eighteen. Neonatal Group B streptococcal meningitis caused permanent neurological injury, including cerebral palsy, epilepsy, bilateral hearing loss, and cortical visual impairment. His care and access needs became part of Sarah’s life as a young Black mother.

Doctors recommended institutionalization, telling Sarah and Marcus that Andy would be “better off” with “professionals,” that they were “too young” to meet his needs, and that keeping him home was “unfair to the child.” They refused and raised him at home. Sarah’s first question was practical: “Okay. What does he need? How do we help him?”

Sarah learned Andy’s early care before completing nursing school and later added registered-nursing experience to her knowledge of him. She learned to read signs of pain when speech was difficult, recognize seizure warnings, and respond to his changing needs over many years.

Dynamics and Communication

Andy calls Sarah “Mama,” and his “M-mama?” can be a check-in, a request for comfort, or a call for help. When he is in pain, frightened, or dysregulated, she responds with clinical knowledge and maternal care. She recognizes when his stutter worsens with fatigue or stress, when muscle tension precedes spasms, and when silence means withdrawal rather than energy conservation.

Sarah explains medical situations and asks for Andy’s input on treatment as he grows older. She respects his account of his own body and does not treat communication or physical difficulty as a measure of intelligence. Andy trusts her clinical judgment during crises and learns from her how to advocate for his needs.

Practical care is one way Sarah expresses affection. During severe spasticity episodes, Andy’s established routine can include prescribed baclofen, a warm bath with Epsom salts and lavender, careful positioning, and rest. The lavender diffuser runs constantly in his room; Sarah stocks the oil, refills it, and replaces the diffuser when it breaks. She brings familiar comfort food, including a Big Mac and chocolate shake, and helps transfer Andy’s six-foot frame when spasms make movement difficult. The warmth and sensory comfort of a bath are distinct from medication treatment.

Sarah knows Andy as an intellectually capable, funny, and loving person with substantial access and care needs. Her advocacy for others to recognize his intelligence coexists with the practical medical support she provides without treating him as a burden.

Race, Disability, and Family Advocacy

Sarah’s experience as a Black mother of a disabled son shaped how she understood recommendations about Andy’s care. The institutionalization proposal questioned whether she and Marcus, as young parents, could raise him at home. Their refusal began years of advocacy against medical and educational judgments that treated Andy’s race and disabilities as reasons to discount the family.

Sarah uses her RN credentials strategically in a medical system that dismisses Black mothers’ observations about their children’s health. Her training gives her clinical language, knowledge of protocols, and the ability to identify when care falls below the applicable standard. Those tools strengthen her advocacy without preventing dismissal; during Andy’s baclofen crisis, staff ignored her accurate clinical assessment until Ellen arrived. Sarah’s use of professional credentials reflects her understanding that institutions may discount her word as a mother, even when she also brings medical expertise.

Room 118 assigned Andy beginning readers and other work far below his ability. Sarah had fought for him to enter a mainstream school and continued trying to make it educate him; afterward, she felt guilty that she had not withdrawn him sooner.

During the baclofen crisis, she arrived at the emergency department with detailed clinical observations and called Ellen only after staff continued dismissing Andy’s symptoms. A white state official was heard where Sarah had not been.

Sarah rejected descriptions of Andy as intellectually incapable or burdensome. Her confidence in him included telling him “You’re going to pass” before the CHSPE and recognizing his love for Cody. The difference between her understanding of Andy and institutional judgments of him informed her later writing for other Black disabled families.

Shared History and Milestones

Early care and schooling

From Andy’s birth onward, Sarah challenged recommendations for institutionalization, clinicians who dismissed his pain, and educational programs that presumed intellectual disability. She obtained a place for him at Riverside School for Exceptional Children despite its segregation, then fought for his entry into Pasadena High School, hoping mainstream education would offer greater opportunity.

Throughout Andy’s childhood, Sarah coordinated epilepsy medication, therapy appointments, equipment, insurance appeals for services and AAC access, and home care for spasticity. She documented symptoms that clinicians dismissed. His hearing loss was inadequately treated, his cortical visual impairment went undiagnosed for years, and his sleep apnea was unrecognized throughout childhood and adolescence. Sarah understood those failures in the context of medical racism and ableism.

At Pasadena High School in 1994, Andy was placed primarily in Room 118, a self-contained special-education classroom. Sarah secured access to some general-education classes and brought home library audiobooks. She recognized that Andy learned through listening but did not yet know the full extent of the education he was building with Fitzgerald, Orwell, Baldwin, and Morrison while Room 118 assigned kindergarten-level work.

In fall 1995, school stress contributed to four seizures in one week. After one seizure, staff left Andy unconscious in his wheelchair and sitting in urine for hours. Marcus called Sarah, and the parents decided that night to withdraw Andy from Pasadena High and educate him at home.

After Cody Matsuda’s spring 1995 suicide attempt and Andy’s fall withdrawal, Sarah and Marcus asked Ellen and Greg whether Andy could join Cody’s home instruction. Ellen replied, “Please. They’re together every day anyway.” The Matsuda-Davis Homeschool Cooperative ran from fall 1995 through spring 1997. Sarah reduced her paid nursing hours and taught English, literature, and creative writing alongside the other parents. She read aloud and provided recordings, using Andy’s listening skills and comprehension; Cody used typing, AAC, and ASL as primary access routes. Lessons allowed rest and wheelchair use without treating either as a failure.

Cody’s 1995 crisis and Andy’s relationship with him

After Cody’s suicide attempt and loss of speech in spring 1995, Andy experienced panic, vomiting, spasms, and multiple seizures. Sarah cared for him through postictal exhaustion and his repeated question, “Is Cody going to die?” She and Marcus supported his visit to Cody in intensive care despite the physical cost of the distress.

Sarah recognized Andy’s romantic love for Cody in spring 1995. On the Friday night after the ICU visit, Marcus questioned whether Andy understood romantic love. Sarah answered, “Marcus. Stop. Yes. He understands.” She reminded Marcus that they had fallen in love at sixteen and seventeen and asked how Andy’s feelings were different. She had noticed how Andy’s face changed when Cody was mentioned. Later that night, she heard Andy say in his sleep, “Love you s’much. Don’t leave, okay? Just… stay.” She believed his feelings and hoped Cody would return them. She also told Andy quietly, “I hope he loves you back too, baby. I really, really do.”

In summer 1995, Sarah found Andy asleep after a call on which he and Cody had remained connected for eleven or twelve hours. She called Ellen, and the mothers were “giggling like teenagers” about the discovery. Sarah exclaimed, “They fell asleep together on the phone!” and, “This is the cutest thing I’ve ever seen. They didn’t want to say goodbye. That’s everything.” They let the boys sleep. Andy and Cody became boyfriends that summer.

CHSPE (spring 1997)

In spring 1997, Andy took the California High School Proficiency Examination with accommodations and scored in the eighty-fifth percentile overall and the ninety-second percentile in English. Sarah was proud but not surprised. When the testing center flagged the scores for review, staff told her, “His scores were surprisingly high given his background.” Sarah answered, “You meant you didn’t think a disabled Black kid could score in the 85th percentile. You reviewed his test because you couldn’t believe he was that smart.”

Baclofen toxicity (fall 1997)

Andy’s health deteriorated during summer 1997. Later that year, Dr. Patel increased his daily baclofen dose from 80 to 100 milligrams; Andy subsequently slept more than sixteen hours at a time, developed severely slurred speech, and vomited for days. Sarah documented his decline, contacted his neurologist’s office, and brought him to the emergency department. She told the triage nurse, “I believe he’s in Baclofen toxicity and needs immediate intervention.” Staff treated her as an “anxious mother” and left Andy waiting for more than an hour as his breathing deteriorated.

Sarah called Ellen, who arrived with her state identification as a white disability-rights official. Andy was examined within five minutes. Testing showed a baclofen level of 1,200 nanograms per milliliter against a therapeutic range of 80–400 and confirmed toxicity. Andy spent three to four days in intensive care. Sarah was angry and grieved that staff had ignored her clinical assessment and knowledge of her son. She insisted that the record show she had reported the symptoms and been told to wait.

Adult care

Sarah continued coordinating care while Andy and Cody attended Pasadena City College from 1997 to 2000 and after Andy transferred to California State University, Northridge. Following years of Sarah’s documentation of his sleep symptoms, he received an obstructive sleep apnea diagnosis in 2002 or 2003. Sarah felt relief that the symptoms were finally recognized and grief over years of lost rest.

Public and Private Life

At medical appointments, education meetings, and insurance appeals, Sarah uses nursing terminology and detailed records to advocate for Andy. She can be calm and direct even when angry. Other families have sought her practical knowledge of documentation, special-education procedures, and institutional appeals.

At home, Sarah could sit beside Andy’s bed at two in the morning with a basin, refill the lavender diffuser, or bring him McDonald’s without making him ask. She helped him through anxiety and exhaustion, reassured him of his intelligence and worth, and made room for rest without shame.

Years of paid work, caregiving, teaching, and advocacy left Sarah exhausted. Knowledge of sudden unexpected death in epilepsy (SUDEP) sometimes kept her awake checking Andy’s breathing. She also carried grief over the years his intelligence had been dismissed and feared what would happen when she could no longer advocate for him.

Emotional Life

Sarah took pride in Andy’s intelligence, capacity for love, resilience, and later advocacy work. She also grieved his pain, the schooling Room 118 denied him, and years in which medical and educational professionals dismissed his symptoms and abilities.

Sarah’s nursing knowledge made the danger of seizures, including SUDEP, specific to her. During the four-seizure week in 1995, she slept little and repeatedly checked whether Andy was breathing. Withdrawing him from Pasadena High was a decision about his safety as well as his education.

Sarah could not prevent Andy’s neonatal meningitis, which occurred before she completed nursing school. Later, despite her training, she could not secure timely treatment for his hearing loss or recognition of his sleep symptoms. She knew she had acted on the information available to her, yet still grieved what Andy had endured.

Andy’s success in the homeschool cooperative, CHSPE results, relationship with Cody, university education, and eventual publication of his memoir affirmed Sarah’s longstanding understanding of his abilities.

Health and Access

Sarah’s nursing training helped her understand clinical protocols and identify inadequate care. Dismissal of her observations was especially painful when staff treated her first as an “anxious Black mother” rather than recognizing either her professional knowledge or her knowledge of Andy.

Sarah refined Andy’s home routine for spasticity through experience with his prescribed medication, warmth, sensory comfort, positioning, and rest. She knew his seizure warnings and signs of pain when speech was difficult, monitored medication effects, and coordinated care for epilepsy, cerebral palsy, gastroparesis, sleep apnea, and their interactions.

The family kept Epsom salts and lavender oil available, Andy’s AAC device charged, recorded materials ready when he needed them, and McDonald’s in the freezer for difficult days. The house was adapted for his mobility, including load-bearing handholds installed when he was about fourteen. Sarah treated these arrangements as ordinary parts of home life.

Sarah understood that racial assumptions and ableism affected whether clinicians believed Andy’s pain and her observations. The 1997 emergency made the consequences immediate: staff delayed care despite her clinical account, then responded when Ellen arrived with official identification.

Changes in Advocacy

The fall 1997 baclofen crisis changed how Sarah approached clinicians. She had documented and reported Andy’s symptoms, but staff delayed his care until Ellen intervened. Sarah continued keeping detailed records and thereafter brought witnesses or sought state-level help when necessary. She no longer assumed that professional courtesy or her nursing credentials would ensure a hearing.

Withdrawing Andy from Pasadena High in fall 1995 was difficult for Sarah because she had fought for his access to a mainstream school. Recognizing that Room 118 was denying him an education and that school stress endangered his health initially felt like a failure. His later progress in the homeschool cooperative showed her that leaving a harmful institution could itself be a form of advocacy.

Sarah also defended Andy’s understanding of his love for Cody when Marcus questioned it. She shared Marcus’s fear that Andy could be hurt but believed they should support him through either a relationship or heartbreak. Her guilt about Andy’s schooling and her growing understanding of his academic life were separate from Marcus’s doubts about his capacity for love.

Lasting Impact

Sarah’s refusal to institutionalize Andy and her work to secure education and medical access shaped his opportunities from childhood onward. Her recognition of his intelligence helped support his later work as a writer and disability-rights advocate.

Sarah later mentored other Black disabled families, sharing language and documentation practices for challenging presumed incompetence and medical dismissal. Her professional experience informed that work without insulating her own family from racism.

Her 1998 essay ‘’When My Black Disabled Son “Surprised” Everyone’’ placed the CHSPE experience in the wider pattern of Black disabled children being presumed incompetent. Her 1999 essay ‘’Teaching My Son Taught Me He Was Never Broken’’ connected Room 118 and the homeschool cooperative to her conclusion that an inaccessible and segregated system had failed Andy.

Her relationship with Andy shaped her understanding of disability justice and medical racism. She came to see both challenging a system and leaving it when it continued to harm him as ways to protect his access and dignity. Andy’s capacity for love and intellectual work had never been in question for her.

Lavender remained a familiar comfort in Andy’s room for decades. After he and Cody moved into their own apartment, he continued to call Sarah when ill or in need of reassurance. “M-mama?” retained its place in their relationship even as Andy became an adult with his own household.