199: Adopting a Medically Complex Child w/ Kristen Henry

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!

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

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

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!  

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! 

From the moment Ashley learned she was carrying twins, her life took a turn she would never have imagined.A diagnosis of twin-to-twin transfusion syndrome set off a chain of events: heart-wrenching decisions for her twin daughters, another complicated pregnancy ending in an emergency C-section at 24 weeks, and more than a year in the NICU with her son. Along the way, she wrestled through overwhelming grief, advocated for her son in a complex medical world, and discovered the ways in which love,light, and loss can coexist.If you’ve ever lived through what felt like a never-ending medical crisis, or wondered if joy could return after devastation, Ashley’s story is for you.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 Ashley on Instagram @ash.bouch!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 usa rating or review in your favorite podcast app! 

Making friends as a disability parent sounds like it should be easy. We’ve already got so much in common. But in reality, it’s complicated.In this episode, Alyssa and Madeline share community stories about what makes these friendships so hard to build and sustain: the comparisons that creep in, the exhaustion that leaves little room for connection, the grief of losingfriends along the way, and the longing for people who “just get it.” Plus, they share a few pieces of advice on how to overcome some of these potential roadblocks.If you’ve ever wondered why making and keeping friends feels so complicated in this world, this conversation will remind you that you’re not alone.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.Listen to Ep 151: Fostering Friendships with OtherDisability Parents. Listen to Ep 154: Deaths in the Community.Listen to Ep 194: Season 12 Kickoff forMadeline’s big announcement!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!

When your child has complex medical needs, the question of more children isn’t always simple.And for some parents of disabled children, the decision to stop at one might not even feel like a decision at all.In this episode, Alyssa shares responses from hundreds of parents who live in this reality: the sadness of not giving their child a sibling, the guilt of choices that never felt like choices, the relief of knowing their family is complete, and the complicated emotions that sit in between.If you’ve felt sadness, certainty—or both at the same time—about stopping at one, we hope this episode will feel deeplyfamiliar.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 99: Family Planning.Listen to 194: Season 12 Kickoff forMadeline’s big announcement!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!

What happens when your child’s rare disease doesn’t look “serious enough” to the outside world? For Ali Platt, the invisibility of her daughter’s Eosinophilic Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.In this episode, Ali shares it all: how caregiving collided with her career in law enforcement, the isolation she’s felt without a local support network, the constant state of survival mode, the grief of not being able to stop her daughter’s pain, and what it’s like to advocate for your child when their disabilities aren’t as visible to the general public.If you’ve ever felt unseen, doubted, or forced to do the impossible just to keep your child safe, this episode will hit home.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to 194: Season 12 Kickoff forMadeline’s big announcement!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! 

Season 12 is here and, once again, the theme is all about relationships: the relationships we have with our children, our partners, our children’s medical teams, and even each other.We’ll be sharing episodes featuring incredibly tender stories, exploring the difficulty around making friends with other disability parents, and discussing the many ways this life can change our romantic relationships, just to name a few.Plus, we have a big announcement! This season is going to be a little different than the last 11, but don’t worry. It’s all good things, and The Rare Life isn’t going anywhere anytime soon.Finally, we’re wrapping up this season opener with clips from the first four episodes. This is one episode you’re not going to want to miss!Links:Join The Rare Life newsletter and never miss an update!Listen to the Getting to Know Alyssa episode.Listen to 140: Alyssa’s Story.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.