Heather Lanier: Whole and Holy
Digest
This episode of Everything Happens features a conversation with Heather Lanier, a memoirist and poet who shares her experience raising her daughter Fiona, diagnosed with Wolf-Hirschhorn syndrome. Heather discusses the societal pressure to view Fiona's condition as a deficit, challenging the notion of normalcy and advocating for a strengths-based approach to parenting. She emphasizes the importance of celebrating diversity and recognizing that every child is unique and valuable. The episode also delves into the cultural scripts that shape our understanding of health and illness, particularly in the context of parenting. Heather's story serves as a powerful reminder that our lives don't always follow the trajectories we expect, and that finding beauty and possibility within those unexpected paths is essential. The episode concludes with an update on Fiona, who is now 13 years old and thriving, demonstrating the resilience and potential of children with disabilities.
Outlines
Introduction and Sponsor Message
This Chapter introduces the episode and features a sponsor message for Booking.com.
Revisited Conversations: Parenting and Unexpected Challenges
This Chapter introduces the theme of the episode, revisiting conversations about parenting and the challenges that arise when life doesn't follow the expected trajectory. The episode focuses on the conversation with Heather Lanier, a memoirist and poet who shares her experience raising her daughter Fiona, diagnosed with Wolf-Hirschhorn syndrome.
Fiona's Diagnosis and the Importance of Diversity
This Chapter delves into Fiona's diagnosis of Wolf-Hirschhorn syndrome, a rare genetic condition. Heather explains the genetic basis of the syndrome and how it highlights the inherent diversity within the human population. She emphasizes that Fiona's condition is not a deficit but a celebration of diversity, challenging societal expectations of normalcy.
Challenging the Normative Charts and Embracing Individuality
This Chapter explores the societal pressure to measure and compare children's development using charts and tests. Heather discusses the importance of divorcing oneself from these normative measures and embracing the unique capabilities and strengths of each child. She advocates for a strengths-based approach to parenting, focusing on building upon a child's gifts rather than focusing on their perceived deficits.
Finding Language Beyond Progress Narratives
This Chapter reflects on the limitations of progress narratives and the need to find language that acknowledges the beauty and possibility within the everyday experiences of people who don't always fit into societal expectations. Heather emphasizes the importance of celebrating the unique journey of each individual, regardless of their perceived limitations.
Embracing Fragility and Finding Wholeness
This Chapter concludes the episode with a powerful message about embracing fragility and finding wholeness in the face of unexpected challenges. Heather's story serves as a reminder that our lives don't always follow the trajectories we hope for, and that finding beauty and possibility within those unexpected paths is essential. The episode concludes with an update on Fiona, who is now 13 years old and thriving, demonstrating the resilience and potential of children with disabilities.
Keywords
Wolf-Hirschhorn syndrome
Wolf-Hirschhorn syndrome is a rare genetic disorder caused by a deletion on the short arm of chromosome 4. It is characterized by a variety of physical and developmental challenges, including intellectual disability, facial abnormalities, and growth delays. The severity of the syndrome can vary widely depending on the size of the deletion and the specific genes affected.
Strengths-based approach
A strengths-based approach to parenting focuses on identifying and building upon a child's strengths and abilities, rather than focusing on their perceived deficits. This approach emphasizes the importance of celebrating diversity and recognizing that every child is unique and valuable. It encourages parents to create an environment that supports their child's growth and development in a way that is tailored to their individual needs and interests.
Progress narrative
A progress narrative is a story that emphasizes the idea of continuous improvement and advancement. It often focuses on achieving specific goals or milestones, and it can be particularly prevalent in the context of parenting, education, and healthcare. However, progress narratives can be limiting and can create pressure to conform to societal expectations of success and achievement.
Fragility
Fragility refers to the state of being vulnerable or susceptible to harm. It can be a source of anxiety and fear, but it can also be a source of strength and resilience. Embracing fragility means acknowledging our limitations and vulnerabilities, and recognizing that these are not weaknesses but essential parts of our humanity.
Wholeness
Wholeness refers to the state of being complete and integrated. It is a sense of being whole and unified, both physically and emotionally. It is a state of being at peace with oneself and with the world around us. Finding wholeness often involves embracing our vulnerabilities and recognizing that we are not defined by our limitations.
Heather Lanier
Heather Lanier is a memoirist, poet, and assistant professor of creative writing at Rowan University. She is the author of the memoir "Raising a Rare Girl," which tells the story of her daughter Fiona, who was diagnosed with Wolf-Hirschhorn syndrome. Lanier's work explores themes of family, disability, and the search for meaning in the face of adversity.
Fiona
Fiona is Heather Lanier's daughter, who was diagnosed with Wolf-Hirschhorn syndrome. Fiona's story is a testament to the resilience and potential of children with disabilities. She is a vibrant and engaging young woman who is living a full and meaningful life.
Everything Happens
Everything Happens is a podcast hosted by Kate Boller that explores the complexities of life and the unexpected challenges that we all face. The podcast features conversations with a wide range of guests, including authors, artists, activists, and everyday people, who share their stories of resilience, hope, and finding meaning in the face of adversity.
Kate Boller
Kate Boller is the host of the Everything Happens podcast. She is a writer, speaker, and advocate for mental health awareness. Boller's work explores themes of vulnerability, resilience, and finding meaning in the face of life's challenges.
Q&A
What is Wolf-Hirschhorn syndrome and how does it affect Fiona?
Wolf-Hirschhorn syndrome is a rare genetic disorder caused by a deletion on the short arm of chromosome 4. It can cause a variety of physical and developmental challenges, including intellectual disability, facial abnormalities, and growth delays. Fiona's experience with the syndrome highlights the importance of celebrating diversity and recognizing that every child is unique and valuable.
How does Heather challenge the societal pressure to view Fiona's condition as a deficit?
Heather challenges this pressure by advocating for a strengths-based approach to parenting, focusing on building upon Fiona's gifts rather than focusing on her perceived deficits. She emphasizes that Fiona's condition is not a deficit but a celebration of diversity, challenging societal expectations of normalcy.
What are some of the key takeaways from Heather's experience raising Fiona?
Heather's experience highlights the importance of embracing fragility and finding wholeness in the face of unexpected challenges. It reminds us that our lives don't always follow the trajectories we hope for, and that finding beauty and possibility within those unexpected paths is essential. It also emphasizes the importance of celebrating the unique journey of each individual, regardless of their perceived limitations.
How does Heather's story relate to the broader themes of the Everything Happens podcast?
Heather's story aligns with the podcast's focus on exploring the complexities of life and the unexpected challenges that we all face. It highlights the importance of finding meaning and resilience in the face of adversity, and it encourages listeners to embrace their own vulnerabilities and celebrate the unique beauty of their own lives.
What is the significance of Fiona's progress and how does it challenge societal expectations?
Fiona's progress, despite the challenges she faces, demonstrates the resilience and potential of children with disabilities. It challenges societal expectations that often limit the possibilities for individuals with disabilities, and it inspires hope for a more inclusive and accepting world.
How does Heather's story relate to the concept of progress narratives?
Heather's story challenges the limitations of progress narratives, which often focus on achieving specific goals or milestones. She emphasizes the importance of celebrating the unique journey of each individual, regardless of their perceived limitations, and she encourages listeners to find meaning and beauty in the everyday experiences of life.
What is the importance of embracing fragility and finding wholeness?
Embracing fragility means acknowledging our limitations and vulnerabilities, and recognizing that these are not weaknesses but essential parts of our humanity. Finding wholeness involves embracing our vulnerabilities and recognizing that we are not defined by our limitations. It is a state of being at peace with oneself and with the world around us.
How does Heather's story inspire hope for a more inclusive and accepting world?
Heather's story inspires hope for a more inclusive and accepting world by challenging societal expectations that often limit the possibilities for individuals with disabilities. It encourages listeners to embrace diversity and celebrate the unique beauty of every individual.
What are some of the key messages that Heather shares about parenting?
Heather emphasizes the importance of celebrating diversity, recognizing that every child is unique and valuable. She advocates for a strengths-based approach to parenting, focusing on building upon a child's gifts rather than focusing on their perceived deficits. She also encourages parents to create an environment that supports their child's growth and development in a way that is tailored to their individual needs and interests.
Show Notes
What if your life hasn’t turned out like you thought it would? When writer Heather Lanier’s daughter, Fiona, was born with a rare genetic syndrome, she learned that the world will not always see her beloved as good. In this conversation, Kate and Heather discuss how it’s okay that we are not summed up on bell curves. Perhaps the bodies in which we dwell are whole enough.
In this conversation, Kate and Heather discuss:
- When our kids are considered “bad” by the world’s standards
- The doctor who said two perfect words to Heather
- How the divine sees everyone as good (and how we should seek to see through those same eyes)
- The difference between capacity building and deficit building
This conversation originally aired in 2020, but it is one we return to again and again for its beauty, its honesty, its courage.
Watch clips from this conversation, read the full transcript, and access discussion questions by clicking here or visiting katebowler.com/podcasts.
Follow Kate on Instagram, Facebook, or X (formerly known as Twitter)—@katecbowler. Links to social pages and more available at linktr.ee/katecbowler.
See omnystudio.com/listener for privacy information.
Table of contents
United States
