Living With Incurable Cancer: Caroline Catlin On Time, Grief, & Mortality

In this episode, we delve into the grief experiences of children and teens with autism. Our guest, Jennifer Wiles, M.A., LMHC, BC-DMT, FT - Director of the HEARTplay Program and a dance movement therapist with decades of experience - joins us to discuss how children with autism process grief and how parents and others in their lives can support them. Drawing on her background in both nonverbal forms of expression and grief support, Jennifer shares compassionate, practical insights rooted in her work with families. This conversation is both timely and essential, especially during Autism Acceptance Month, as it highlights the importance of expanding how we understand and support grief beyond more traditional approaches rooted in words.  We discuss:   The importance of using direct, concrete language when talking about death  Common misconceptions about how kids with autism express grief  Why behaviors often interpreted as indifference may be expressions of deep emotion  How sensory overload and disrupted routines can intensify grief reactions  The powerful role of nonverbal communication—movement, gesture, rhythm, and ritual—in grief expression  How social stories and structured activities can prepare kids for events like funerals  Grief rituals for significant days like anniversaries and birthdays  The impact of other losses, including changes in routine, missed milestones, and the death of service animals  Resources mentioned:  Toolkit from the National Alliance for Children’s Grief (NACG): A resource for supporting children of all abilities who are grieving Books:  I Have a Question About... series by Meredith Polsky & Arlen Gaines  Understanding Death and Illness and What They Teach About Life by Catherine Faherty  A Kids Book About Grief by Brennan Wood  HEARTplay Program: Free downloadable social stories and grief support  Have feedback or a story to share? Email us at [email protected]  Visit dougy.org for grief support resources, activity sheets, and past episodes. 

Grief often arrives without warning and changes everything we thought we knew about ourselves, our families, and the world around us. In this episode, we talk with Erin Nelson and Colleen Montague about their new book, When Grief Comes Home, a resource created from years of both personal loss and professional experience supporting families who are grieving. Erin, founding Executive Director of Jessica’s House in Central California, and Colleen, Program Director, discuss how they came to write this book that blends memoir, practical tools, and reflective questions.  We discuss: Erin's personal experience with grief including the death of her husband when their children were just 3 and 5 years old, her mother from suicide, and her son Carter, who died in an accident The unique impact of sudden loss  The power of rituals and expressive activities  What teens really need when they are grieving Strategies for returning to school and work Activites and discussion starters parents and caregivers can use to connect with their kids Learning to trust yourself in grief Making space for the dark parts of grief while also staying open to moments of light and joy Resources & Mentions:  When Grief Comes Home: A Guide For Living Through Loss While Supporting Your Child, by Erin and Colleen – [available wherever you get your books]  Jessica’s House: https://jessicashouse.org/  Dougy Center: https://www.dougy.org/  💬 Connect with us: [email protected]  🎧 If you find this episode meaningful, consider leaving us a rating or review to help more people find Grief Out Loud.  Grief Out Loud is produced by Dougy Center: The National Grief Center for Children & Families. 

What does it mean to lose your anchor people? In a short period of time, Renée Watson experienced the death of her mother, her mentor Nikki Giovanni, and her childhood friend, Charnetta. Renée shares how these experiences influenced her latest novel for young readers, All the Blues in the Sky, which follows 13-year-old Sage as she navigates grief after the death of her best friend. Renée Watson is a #1 New York Times bestselling author whose recent book All the Blues in the Sky explores grief through the eyes of a young person. Her young adult novel, Piecing Me Together, received a Coretta Scott King Award and Newbery Honor. Her children's picture books and novels for teens have received several awards and international recognition. Many of her books are inspired by her experiences growing up as a Black girl in the Pacific Northwest. We Discuss Experiencing multiple significant losses in a short period of time  The impact of losing "anchor people" in one's life  How Renée's mentor and friend, Nikki Giovanni, supported her as she grieved for her mother  The spectrum of emotions that come with grief  Why it’s important to acknowledge grief rather than avoid it  What Renée learned about grief from writing her main character, Sage.   The comparison of sudden loss versus anticipated loss  Finding tangible reminders of love after someone dies  Connect with Renée Watson  Website: RenéeWatson.net  About Dougy Center  Grief Out Loud is a production of Dougy Center, the National Grief Center for Children and Families in Portland, Oregon. For more resources, visit dougy.org or email [email protected]. 

In this deeply moving episode we talked with Myra Sack about the love, loss, and legacy of her daughter, Havi. Diagnosed with Tay-Sachs disease at just 15 months old, Havi's life was brief but profoundly impactful. Myra shares how she and her family navigated the unbearable reality of their daughter's illness and death, including transforming their Shabbat ritual into "Shabbirthdays" held every Friday to celebrate Havi's life.   Myra reflects on the arduous medical rollercoaster that led to Havi's Tay-Sachs diagnosis, the challenges of navigating a world that struggles to support the bereaved, and how she and her family find solace in sharing Havi's legacy with others. She also discusses her memoir, Fifty-Seven Fridays, and how she started E-Motion, Inc. an organization that harnesses movement, community, and ritual to support those who are grieving.   We discuss:  The ongoing presence of grief, particularly during milestone moments and everyday life.  How Myra and her husband Matt created the Shabbirthday ritual to honor Havi each week.   How Havi continues to teach others even after her death.  The impact of isolation for grieving families and the struggle of navigating social norms post-diagnosis.  Finding ways to stay connected to Havi through rituals, storytelling, and shared memories.  Myra's journey into grief education and the founding of E-Motion, which supports people who are grieving through movement and community.   The need for more grief-informed communities.  Resources & Links:  Fifty-Seven Fridays by Myra Sack  E-Motion What Happened to You? By Bruce D. Perry & Oprah Winfrey Connect With Us: Have thoughts on this episode? We'd love to hear from you! Email us at [email protected] or visit our website for more resources and past episodes. 

What does it mean to live with an incurable illness while navigating grief, time, and the complexity of human connection? In this episode of Grief Out Loud, we sit down with Caroline Catlin—writer, artist, and grief care worker—to explore her experience of living with an incurable brain cancer diagnosis.  Caroline shares how her relationship with cancer has evolved over the past six years, from the early days of fighting for a diagnosis to the ongoing reality of regular scans and the uncertainty of what’s next. She speaks candidly about anticipatory grief, the way mortality shapes her daily life, and how her work in end-of-life photography and peer grief support informs her perspective on loss.  We also discuss:  The impact of a life-altering diagnosis on friendships and relationships  How people can better support those living with illness  The intersection of living with illness and supporting grieving children  The unique grief of knowing time is limited—and learning to live within it  Caroline also shares about her grief writing workshops, her creative process, and how gardening has become a grounding practice for her.  Connect with Caroline:  Website: carolinecatlin.com  Instagram: @mybodyofwater  Grief writing workshops: Sliding scale, open to all  For more resources and to connect with Grief Out Loud, visit Dougy Center. 

In this episode of Grief Out Loud, we welcome back Carla Fernandez, co-founder of The Dinner Party, to talk about her new book, Renegade Grief, in which she explores the question: "Now what? What are we supposed to do after someone dies?" Carla reflects on the death of her father, the unconventional paths she’s taken to process her grief, and how The Dinner Party came together from a desire to create non-traditional spaces for young adults navigating loss. In this conversation we delve into the dominant narratives around grief — and how the few that do exist may not fit for most of us. From potluck meals to altar building, Carla shares creative ways people can honor their grief and build community at the same time. We discuss: The inspiration behind Renegade Grief and why Carla wished this book existed when her dad died. How traditional grief support spaces often don’t work for young adults. The origin story of The Dinner Party, and how one dinner with friends who “get it” can change everything. Why food, memory, and grief are so deeply intertwined. The myth that grief gets “easier after the first year” — and why year two can be even harder. Grief rituals and care practices for both early grief and the long haul. Creating identity-based grief spaces, like LGBTQ+ and BIPOC tables, and why specificity matters in grief support. Finding joy, creativity, and unexpected connection through grief (without forced positivity). Carla Fernandez is the co-founder of The Dinner Party, a community-driven organization that brings together grieving young adults for potluck dinners and meaningful conversations about life after loss. Her new book, Renegade Grief, is a practical and heartfelt guide to building personal rituals and support networks that meet you where you are — not where society says you should be. Resources Mentioned: Renegade Grief (out March 11, 2025) The Dinner Party - Peer grief support for 20 to 45 year-olds The Grieving Brain by Mary-Frances O’Connor The Smell of Rain on Dust by Martín Prechtel The Death of My Two Fathers - Documentary by Sol Guy Connect With Us: Dougy Center Website: dougy.org Email the Show: [email protected] Listen to All Episodes: Grief Out Loud Podcast Follow us on Instagram and Facebook

In this episode Bryan Jung talks about the experience of being only nine years old when his father, a prominent lawyer in the Korean community, was tragically shot by another lawyer. Fifteen months later and just nine days before Bryan’s 11th birthday, his father died. Bryan reflects on the impact of his father’s death, the strength of his family, and how he continues to honor his dad’s legacy. He shares how his grief evolved over time, the role of community support, and the lessons he’s carried into his own life. Bryan also discusses founding This Is Why, an online platform that provides space for individuals who lost a parent as a child or teen to share their stories and find connection.  We Discuss:  Bryan’s memories of his father and the impact of his death on their family  Navigating life after his father’s shooting and the challenges of childhood grief  The role of community support and the strength of his mother in keeping the family together  How volunteering at Camp Erin deepened his understanding of grief and inspired him to create This Is Why  The power of storytelling in grief and his commitment to continuing his father’s legacy  Forgiveness and personal growth in the aftermath of tragedy  How grief anniversaries and milestones continue to shape his journey  Resources & Links:  Learn more about This Is Why: thisiswhy.life  Connect with This Is Why on social media  Information on Camp Erin: elunanetwork.org  Dougy Center: dougy.org  Join the Conversation:  We’d love to hear from you! If you have thoughts on this episode or want to share your own grief journey, email us at [email protected].     

In this episode, we talk with Judy Lipson, author of A Celebration of Sisters. Judy shares her journey of sibling loss, reflecting on the deaths of her sisters—Margie, who died of anorexia, and Jane, who died in a car crash—and how their absence shaped her identity. She opens up about the complexities of sibling grief, the impact of Margie's long battle with an eating disorder, and the moment when the grief she had pushed aside for so long finally caught up with her. Through writing, ice skating, and organizing a fundraiser in their honor, Judy found ways to reconnect with her sisters and keep their memory alive. She also discusses the evolving landscape of sibling grief support and how sharing her story has helped others navigate their own losses. We Discuss: Growing up as the middle of three sisters The shock of losing Jane when Judy was 25, and then Margie nine years later The challenges of grieving while balancing responsibilities How ice skating and philanthropy became outlets for her grief The changing landscape of sibling grief support What she’s most proud of in her grief process Resources & Links: Judy Lipson’s Website: judylipson.org Subscribe to Judy’s Substack: judylipson.com Book: A Celebration of Sisters – Available on Amazon and local bookstores Dougy Center Resources: dougy.org  

When Jessica Waite's husband, Sean, died suddenly, she knew him as a dedicated father to their young son and a loving, engaged spouse. In her book, The Widow’s Guide to Dead Bastards, Jessica reveals the shock and heartbreak of discovering Sean's double life. What began as a devastating loss quickly became even more complex as she uncovered the many secrets he had kept—hidden debt, drug use, and infidelity. Jessica talks about the rage, confusion, and emotional turmoil of grieving someone you love while simultaneously reckoning with the truth of who they really were. She reflects on anger as a catalyst for change, what she learned about parenting her son through his grief, and how ultimately she found a way back to herself. We disuss: The shock of uncovering a Sean's secrets after his death The role of anger in grief  Navigating single parenthood while managing the weight of betrayal The complexity of holding both love and hurt for Sean The social pressures to maintain the image of someone who has died How humor and writing helped Jessica process her experience Resources & Links: Connect with Jessica Waite on Substack: The Widow’s Guide To Purchase The Widow’s Guide to Dead Bastards online Learn more about grief support at Dougy Center Support Grief Out Loud: Grief Out Loud is produced by the Dougy Center, the National Grief Center for Children and Families. This podcast is sponsored in part by the Chester Stephan Endowment Fund. For more grief resources, visit dougy.org. Join the Conversation: Have thoughts on this episode? Email us at [email protected]. Thank you for being part of our community!

In this episode we talk with Annie Sklaver Orenstein, author of Always A Sibling: The Forgotten Mourners. Annie talks about her older brother, Ben, who died when he was deployed in Afghanistan, and how his sudden death reshaped her understanding of grief and loss. They discuss the unique challenges of sibling loss and how Annie ultimately decided to write the book she wished she had when Ben died. We Discuss: Annie’s relationship with her brother Ben and his role in her life The day Annie learned of Ben’s death and the immediate aftermath How grief intersected with anxiety The unique and often overlooked experience of grieving a sibling Writing Always A Sibling and the need for more grief resources for siblings The complexities of sibling grief in complicated relationships The impact of signs from Ben and how Annie learned to find comfort in them Navigating the question, "Were you close?" Coping with grief while navigating major life milestones, such as becoming a parent Resources Mentioned: Annie Sklaver Orenstein’s book: Always A Sibling: The Forgotten Mourners (Available on Amazon, Bookshop.org, and local bookstores) Dougy Center's grief resources and support programs (www.dougy.org) Connect with Annie Sklaver Orenstein: Instagram: @anniesklaverorenstein Get in Touch with Us: Email: [email protected] Website: www.dougy.org Want to Support the Show? Follow us on Apple Podcasts, Spotify, or wherever you listen Leave us a rating & review