S6 246: Eugenia Ortega — A Look into Our Window
Curiosity and Empathy [44:20]
Episode Length: 44:20
Published Date: Thu, 18 Nov 2021 01:00:00 -0800
Session 6
About this episode:
Marty Solomon and Brent Billings are joined by special guest Eugenia Ortega to discuss her experience raising a child with autism, and encouraging all of us to have curiosity and empathy for people whose experiences are different than our own.
A Look into Our Window by Eugenia Ortega
Additional audio production by Gus Simpson
Special Guest: Eugenia Ortega.Notes
*Note: The following notes are handwritten by me, Adam, and I reserve the right to be wrong.
BEMA 246: Eugenia Ortega - A Look into Our Window - Study Notes
Title & Source Summary
Episode: 246 - Eugenia Ortega: A Look into Our Window Hosts: Marty Solomon and Brent Billings Guest: Eugenia Ortega Focus: Personal testimony of raising a child with severe autism and finding strength in faith during suffering
This episode features special guest Eugenia Ortega, who shares her family’s journey raising their son Dante, now 19, who has severe autism. Eugenia discusses her book “A Look Into Our Window,” which provides an intimate glimpse into the daily realities, struggles, and moments of beauty experienced by families caring for loved ones with severe special needs. The conversation explores themes of suffering, faith, community support, and how the church can better understand and embrace those who live on the margins of typical experiences.
Key Takeaways
- Suffering and affliction can deepen our relationship with God in ways that comfort and ease cannot
- The church often unintentionally marginalizes families with special needs by building systems for normative experiences only
- Awareness and empathy are essential first steps toward creating inclusive communities
- The biblical concept of the Body of Christ means we are all bound together - when one member suffers, all suffer together
- Those who seem “weaker” in the body are actually indispensable to the health and wholeness of the community
- Sleep deprivation and constant care create a survival mode that most people cannot fully comprehend
- Finding solidarity with others who share similar experiences provides irreplaceable understanding and support
- God’s presence and strength become tangible realities when experienced through deep suffering
- Curiosity and empathy are transformative postures that help us see and honor the humanity in all people
- The margins of society are where we often find those who most powerfully reflect Christ’s suffering and resilience
Main Concepts & Theories
The Reality of Severe Autism
Eugenia’s son Dante was diagnosed with autism at age two after showing regression around 12-13 months. The doctor’s diagnosis came with little practical guidance: “It’s going to get worse before it gets better.” Severe autism in Dante’s case manifests as:
- Complete inability to sleep without medication (and difficulty even with strong medication)
- Non-verbal communication challenges leading to deep frustration
- Self-injurious behaviors including screaming, hitting, and causing himself to bleed
- Social isolation due to difficulty bringing him into public spaces
- Need for 24/7 care with no ability for caregivers to fully unplug
The autism spectrum is vast - as Eugenia notes, “If you know one person with autism, you know one person with autism.” Dante represents what she describes as being “trapped inside” his own body, unable to communicate his needs or find relief from his internal distress.
The Unseen Population
Eugenia emphasizes that people with severe special needs represent an “unseen population” because:
- It is extremely difficult to take them out in public settings
- Families become isolated due to the demands of constant care
- Churches and communities are not structured to accommodate their needs
- Resources and support systems are inadequate and have long waiting lists
- The general public lacks awareness of what these families experience daily
This invisibility creates a cycle where the lack of awareness perpetuates the lack of support, which further isolates families.
Survival Mode and Sleep Deprivation
The chronic sleep deprivation Eugenia describes goes far beyond typical parenting exhaustion. Dante, without medication, does not sleep at all - he screams and makes noise throughout the night. Even with strong medication, sleep remains elusive. This creates:
- Physical exhaustion that affects every family member
- Emotional depletion that makes it difficult to engage socially
- Mental fog that complicates decision-making and daily functioning
- Spiritual wrestling and desperation in crying out to God
The experience is one of “hanging on to dear life,” as Eugenia describes it - a constant state of survival where you cannot simply step away, take a break, or unplug from the demands.
Wrestling with God in Suffering
Eugenia’s faith journey through raising Dante includes honest wrestling with God:
- Crying out “Why?” and “Where are you, God?”
- Feeling at times that God wasn’t listening or present
- Being brought to her knees repeatedly
- Finding God faithful even when circumstances don’t change
- Discovering strength she didn’t know she possessed
She connects deeply with the Psalms, which express anguish and desperation while ultimately affirming God’s faithfulness. Her testimony is powerful precisely because it comes from a place of ongoing struggle rather than past suffering now resolved.
The Body of Christ and Weaker Members
Marty brings in 1 Corinthians 12:12-26, particularly focusing on verses 22-26, which teach that:
- The body has many diverse parts that form one unified whole
- Members that seem “weaker” are actually indispensable
- Parts that seem less honorable should be treated with special honor
- God has arranged the body to give greater honor to “inferior members”
- When one member suffers, all suffer together
- When one member is honored, all rejoice together
This passage reframes how we should view those with disabilities or chronic struggles. They are not peripheral to the community but essential to its wholeness. Their suffering is not just “their experience” but becomes “our experience” when we properly understand our unity in Christ.
The Tribe of Dan Principle
Marty references earlier BEMA teaching about the tribe of Dan and the placement of the weak and marginalized as a test of community values:
- In a godly community reflecting shalom, the weak are at the center with wagons circled around them
- In empire-based communities, the weak struggle at the margins, trying to keep up
- Where you find the vulnerable reveals whether a community operates by kingdom or empire principles
This framework helps diagnose whether churches and communities are truly embodying biblical values or have been co-opted by cultural norms that prioritize strength, efficiency, and normative experiences.
Alien-Orphan-Widow and Shared Humanity
The biblical triad of “alien-orphan-widow” represents those on the margins who remind the community of shared humanity. When we:
- See and notice those on the margins
- Are curious about their experiences
- Develop empathy for their struggles
- Close the gap between normative and marginalized experiences
We participate in God’s redemptive work of restoring wholeness to the community.
Curiosity and Empathy as Spiritual Disciplines
Marty articulates two key postures for engaging with stories like Eugenia’s:
Curiosity: Not listening to respond or even just to learn, but listening to discover - to genuinely hear and see people as they are, to latch onto their humanity.
Empathy: Moving beyond intellectual understanding to actually caring, getting bound up in their story, allowing their experience to change our posture and perspective.
These are not natural human tendencies, especially in a culture that doesn’t teach empathy and rewards being right over being compassionate.
The Purpose of Sharing Stories
Eugenia wrote her book and shares her story to:
- Bring awareness to what families with severe special needs experience
- Help others who are suffering know they are not alone
- Give people hope through seeing God’s faithfulness in suffering
- Change how people think, speak, and act toward families like hers
- Encourage churches to consider this population in their ministry planning
Her motivation is not self-help or autism education in a clinical sense, but creating windows into lived experience that can foster understanding and compassion.
Examples & Applications
Inadequate Support Systems
When Dante was young and the family sought behavioral therapy, they were placed on a waiting list. The callback came two years later - after they had already moved from Virginia to San Diego. This illustrates how even existing resources are often inadequate, with demand far exceeding availability.
Finding Group Homes
Dante currently lives in a group home in the San Diego area, which Eugenia describes with deep gratitude. However, she notes that such homes are “very hard to find” and “not a lot out there.” Dante is in an adolescent home, and they will need to navigate finding appropriate placement once he ages out at 21-22, adding another layer of uncertainty to their journey.
The Airport Book Encounter
After finishing Eugenia’s book on a plane, Marty accidentally left it in the seat pocket. When he asked the gate agent to retrieve it, she saw the book and asked about it. She revealed that she has a sibling with severe autism and wanted to send the book to her family, describing their situation as “such a difficult, lonely place to live.” This serendipitous moment demonstrates the isolation many families feel and the power of finding solidarity.
Church Connection Challenges
Eugenia notes that even though she has Christian friends, the exhaustion of caring for Dante makes it “hard to go to church in person” and difficult to get together with people or fully share what they’re experiencing. Churches inadvertently create barriers by not considering this population when designing ministries and gatherings.
Moving Between Communities
The family has lived in Mexico, South America, Virginia, and now San Diego. Each move brings the challenge of finding adequate resources and building new support networks. The lack of resources in the DC area when Dante was young forced them to seek out whatever help they could find, often with minimal success.
Small Group of Understanding Parents
Eugenia maintains a small group of parents who have children with severe special needs. While they don’t talk frequently and have different approaches to care, they understand each other’s experiences in a way others cannot. This solidarity provides irreplaceable support even when infrequent.
Reading the Psalms in Anguish
When Eugenia opens her Bible and reads in Psalms, “My heart is in anguish within me,” she finds deep connection. The Psalms give language to her experience and remind her that God hears the desperate cries of those who suffer. This isn’t abstract theology but lived reality.
Practical Application of Biblical Study
Eugenia credits BEMA with helping her know God more deeply and apply Scripture to her life. She specifically mentions following the instruction in Episode 0 to start from the beginning, binging through Genesis to Revelation, and discovering depths she had never known in her 30 years as a Christian. She also began exploring resources mentioned on the podcast, including John Whitaker and the BibleProject.
Unsolicited Advice and Criticism
Despite the encouragement Eugenia has received, she also encounters critics and unsolicited advice, particularly from people who don’t have special needs children. This reflects the human tendency to offer solutions without first seeking to understand, prioritizing being right over being empathetic.
Potential Areas for Further Exploration
Church Accessibility and Inclusion
- How can churches audit their programs, facilities, and events for accessibility to families with severe special needs?
- What would it look like to center worship and community life around those who are typically marginalized?
- How can congregations develop respite care programs to support exhausted caregivers?
- What training do church leaders and volunteers need to welcome and support families with disabilities?
Theology of Suffering
- How do we hold together God’s goodness and power with ongoing, unresolved suffering?
- What is the relationship between suffering and spiritual formation?
- How do the Psalms model honest prayer that includes lament, anger, and confusion alongside trust?
- What does it mean that Christ’s suffering makes him able to sympathize with our weaknesses?
The Weaker Members Paradox
- In what ways are those who seem “weaker” actually indispensable to the body of Christ?
- How does honoring the less honorable members change the entire community?
- What would it look like to structurally prioritize the needs of the marginalized?
- How do we guard against tokenism while genuinely centering vulnerable populations?
Community Care Models
- What alternatives exist to institutional care for adults with severe special needs?
- How can extended families and faith communities share the burden of care?
- What role should government, private organizations, and churches play in supporting families?
- How can we create sustainable support that doesn’t burn out caregivers?
Biblical Models of Disability
- How did ancient Israel’s laws and community structures account for those with disabilities?
- What does Jesus’ healing ministry teach us about disability and wholeness?
- How should we understand physical healing in this age versus the age to come?
- What is the difference between healing and cure, and what does each imply about value and dignity?
Sleep Deprivation and Health
- What are the physiological and psychological effects of chronic sleep deprivation?
- How does lack of sleep impact spiritual life and faith?
- What practical interventions exist for individuals who cannot sleep despite medication?
- How can medical and therapeutic communities better support families dealing with sleep disorders?
The Margins and Empire
- What are the markers of empire-based thinking versus kingdom-based thinking in modern churches?
- How do church growth strategies sometimes prioritize the strong over the weak?
- What would it cost churches to truly center the vulnerable in their mission?
- How do we navigate the tension between growth/efficiency and radical inclusion?
Shared Humanity and Image of God
- How does recognizing the image of God in all people change how we view disability?
- What does it mean that every person bears divine likeness regardless of ability?
- How can we move from pity or charity toward genuine relationship and mutuality?
- What do people with disabilities teach the church about being human?
Curiosity and Empathy as Practices
- What spiritual disciplines cultivate curiosity about others’ experiences?
- How can we develop empathy in a culture that rewards being right?
- What role does silence and listening play in empathetic presence?
- How do we balance speaking up for justice with listening to those directly affected?
The Normative Experience Problem
- How do church systems assume and privilege “normal” experiences?
- What barriers exist for single parents, people with chronic illness, mental health challenges, or other non-normative situations?
- How can diversity in leadership help identify blind spots?
- What would it cost to redesign church life around flexibility and accommodation?
Comprehension Questions
-
How does Eugenia’s description of chronic sleep deprivation and constant care challenge our understanding of what “bearing one another’s burdens” might practically require from the body of Christ?
-
According to 1 Corinthians 12:22-26, why are the “weaker members” of the body described as “indispensable,” and how does this reframe how churches should structure their communities and ministries?
-
What does Eugenia mean by describing people like Dante as an “unseen population,” and what factors contribute to this invisibility in both church and society?
-
How does Marty’s “tribe of Dan principle” distinguish between communities built on kingdom values versus empire values, and what would change if churches truly placed the weak and marginalized at the center?
-
Why is Eugenia’s testimony about God’s faithfulness particularly powerful coming from a place of ongoing struggle rather than past suffering that has been resolved, and what does this teach us about the relationship between faith and suffering?
Personalized Summary
This episode offers a profound window into the daily reality of raising a child with severe autism - not as an academic exercise, but as an invitation into shared humanity and the body of Christ. Eugenia Ortega’s story challenges us to examine how we build our communities, who we center in our gatherings, and whether our systems reflect kingdom values or empire thinking.
The honesty with which Eugenia shares her struggles - the sleepless nights, the desperate prayers, the feelings of God’s absence alongside unwavering trust in His presence - models a faith that doesn’t require neat resolutions to remain authentic. Her wrestling with God echoes the Psalms and reminds us that lament and trust are not opposites but companions on the journey of faith.
Paul’s teaching about the body of Christ takes on new depth when we hear it through Eugenia’s experience. The “weaker members” are not peripheral but indispensable. The parts that seem less honorable deserve special honor. When one member suffers, we all suffer - not as a metaphor, but as a reality we must live into. Eugenia’s suffering with Dante is not just her experience; in Christ, it becomes our experience, calling us to curiosity, empathy, and action.
The challenge for churches is clear: have we built our communities for normative experiences only, leaving families like the Ortegas struggling at the margins? Do our programs, facilities, and rhythms of life assume everyone can come to us, or are we willing to go to them? Are the weak and vulnerable at the center of our concern, or are they expected to keep up as best they can?
Eugenia’s motivation in writing her book and sharing her story is not to complain but to create awareness - to help people see what they cannot see, understand what they have not experienced, and respond with compassion rather than advice. She wants churches to remember this population exists, to pray for them, to consider their needs when planning and organizing.
The conversation ultimately calls us to two essential postures: curiosity and empathy. Curiosity moves us beyond listening to respond or even listening to learn, toward listening to discover - to genuinely see and hear others as they are. Empathy moves us beyond intellectual understanding to being bound up in others’ stories, allowing their experiences to change how we approach life and faith.
Eugenia reminds us that those who suffer are not problems to be solved but gifts to the body of Christ. Through Dante, she has been drawn closer to God in ways comfort never could accomplish. The church needs people like Eugenia and Dante - not despite their struggles, but because of what their presence teaches us about faithfulness, resilience, and the God who strengthens the weary and gives power to the weak.
This episode is ultimately about seeing - seeing the unseen, honoring the dishonored, and recognizing that the wholeness of the body depends on every member, especially those who seem weakest. May we have eyes to see, ears to hear, and hearts moved to respond with the curiosity and empathy that reflect the heart of Christ.
Note: For more information about Eugenia’s story, her book “A Look Into Our Window” is available, and she can be contacted at alookintoourwindow@gmail.com or found on Facebook under Eugenia Ortega.
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