203: How to Strengthen Your Marriage When You’re Always in Survival Mode w/ Amanda Griffith-Atkins
Your child’s diagnosis can reshape everything, marriages included. The same partnership that once felt effortless can become consumed by care plans, schedules, and unspoken grief. Over time, love turns into teamwork—and sometimes, survival. In this conversation with Amanda Griffith-Atkins, we unpack the real challenges couples face when parenting through medical complexity: the imbalance of the mental load, the grief that seeps into communication, and the long road back to connection. Amanda offers practical, compassionate guidance for finding your way back to each other, even if right now, your marriage feels like it’s in survival mode.If you’ve ever wondered what “making it work” really looks like when life is this hard, this conversation offers validation, compassion, and a path back to understanding.Links:Get a copy of How to Handle More Than You Can Handle by Amanda Griffith-Atkins.Listen to Ep 156: Should I Get a Divorce?Listen to Ep 180: Does It Get Easier?Listen to Ep 159: Sharing the Mental Load.Listen to Ep 147: Sexual Intimacy.Listen to Ep 146: The Dad Episode.Listen to Ep 182: Hobbies.Get a copy of Fair Play by Eve Rodsky.Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Amanda on Instagram @amanda.griffith.atkins!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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202: All the Ways Our Marriages are Impacted by Disability Parenting
When your days revolve around medical routines, sleepless nights, and endless caregiving, marriage can start to feel more like project management than partnership. In this episode, Madeline and Alyssa unpack all the ways that marriage is impacted amidst medical and disability parenting—the disconnection, resentment, and chronic stress that test relationships, and the deepened understanding, teamwork, and shared strength that can come from walking through it together.Whether you think your marriage has struggled, beenstrengthened, or maybe experienced a little bit of both, this episode has something you can relate to.Links:Listen to Ep156: Should I Get a Divorce?Listento Ep 187: Do you Miss Who You Used to Be?Listento Ep 159: Sharing the Mental Load.Listento Ep 147: Sexual Intimacy.Listento Ep 171: Financial Strain.Listento Ep 99: Family Planning.Listento Ep 146: The Dad Episode.Listento Ep 139: In-Home Nursing.Listento Ep 135: Careers.Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app
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201: Roya's Story | A Diagnosis Without a Map, Learning to Advocate + the Journey Back to Herself
From the moment her daughter was born, Roya had an inkling that something was different. What followed was a long year of uncertainty, endless medical tests, and finally anofficial diagnosis of Schaaf-Yang syndrome... all on top of learning a new language of care no parent expects to need.In this episode, Roya shares the disorienting early days of her daughter’s diagnosis journey, what tending to her own mental health looked like in the midst of caregiving, and how she eventually found purpose in advocacy and community. From becoming her daughter’s “historian” to learning that even the strongest caregivers break down, Roya’s story captures so many of the aspects that shape the lives of disability parents.If you’ve ever had to rebuild yourself in the middle of medical chaos, this conversation will hit home. Links: Listen to Ep. 180: Does Disability Parenting Ever GetEasier?Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Connect with Roya on Instagram @roya.malaekehDonate to the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app
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200: Facing End of Life Choices + The Way Life Changes After Child Loss w/ Stephanie Stanley
When your life has revolved around caring for your medically complex child, their absence changes everything: your routines, your identity, your relationships, and evenyour purpose in life.In this tender conversation, Stephanie Stanley shares what it’s like to live through end of life decisions for your medically complex child and to continue on after the caregiving ends. We cover the isolation that follows, the way grief changed her relationships and community, and the small ways she’s keeping Payton close.She also opens up about the support that helped her most, her advice for those walking alongside grieving parents, and what she wishes others understood about the grievingprocess after child loss.Just a note: this episode covers themes of grief,child loss, end of life decisions, and more. Please listen with care.If you have lost a child, may face child loss in the future, or simply care for someone who has been in a similar position, this is an episode you can’t miss.Links: Listen to Ep 152: Stephanie’s Story.Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Connect with Stephanie on Instagram @steph_stanley12Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app!
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199: Adopting a Medically Complex Child w/ Kristen Henry
Sometimes the path to parenthood looks nothing like we planned.For Kristen, years of infertility led to adoption... and ten days after bringing her daughter home from the NICU, a cystic fibrosis diagnosis turned her world upside down again. In this episode, she shares what it’s been like to navigate open adoption alongside the realities of raising a medically complex child: the intertwined joy of becoming a parent and the heartbreak of another family’s separation, the shock of adiagnosis, the fog of early grief, the gaps in family medical history, and the delicate balance of honoring her daughter’s birth family while advocating for her care.If you’ve ever wondered what it’s really like to navigate disability and adoption at the same time, this conversation pulls back the curtain. Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow us on Instagram @the_rare_life!Connect with Kristen on Instagram @deep_delightful_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app!
This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney.
Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting.
Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
Netherlands