What does it mean when a dream brings you to tears before breakfast?In this mini episode, Alyssa and I dive into grief dreams: those vivid, emotional dreams where our children speak, run, play, or show up in ways they can’t in waking life. Sometimes they comfort us. Sometimes they wreck us for the day.We share stories from the community about the longing, guilt, tenderness, and pain these dreams bring up, and how they reveal just how deep our grief can go. If you’ve ever woken up from a grief dream that colors your whole day, this episode is for you!Links:Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Fill out our contact form to join upcoming discussion groups!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.
--------
16:47
--------
16:47
How Your Monthly Cycling Might Be Impacting Your Caregiving Experience w/ Suzi Boubion
Hormones, cycles, and caregiving—oh my.In this Summer Mini, Madeline is joined by Suzi Boubion to talk about how our menstrual cycles can affect caregiving formedically complex kids. From feeling like a superhero during ovulation to falling apart in the luteal phase, Suzi breaks down the emotional and physical rollercoaster that is living in a cycling body.They talk about the specific ways each phase can show up in caregiving: which days are best for handling appointments, why grief hits harder at certain times of the month, and how understanding your own rhythms can bring clarity and help you embrace self-compassion instead of perfection.If you’ve ever felt like your hormones are sabotaging your ability to cope, this episode might help.
--------
26:51
--------
26:51
Everything You’ve Ever Wanted to Know About Alyssa
We usually cover a different guest and topic each episode, but this week, we’re peeling back the curtain to get to know Alyssa: the show’s producer, right-hand lady, and longtime member of the community. In this special mini episode, Alyssa shares more about herself, from her life as a caregiver and mom to her love of swimming, salted caramel ice cream, and why getting dressed up feels like the ultimate chore.She talks about going from listener to producer, how she copes with heavy topics, and why she’d rather talk about her hatred of dishes than accept too many compliments. You’llalso hear plenty of lighter tidbits, from her favorite childhood memories to why banana-flavored candy is absolutely not it.This episode is equal parts heartfelt and fun—an honest, vulnerable glimpse into the person behind the scenes.Links:Listen to 140: Alyssa’s Story.Hear Alyssa’s other episodes: 187: Do You Miss Who You Were? BONUS: The Political Climate, 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 125: Travel w/ Disabled KidsFollow Alyssa on Instagram @caffeinated_caregivers!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!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, pleaseleave us a rating or review in your favorite podcast app!
--------
14:37
--------
14:37
Book Review: “How to Handle More Than You Can Handle” by Amanda Griffith-Atkins
What does it really mean to care for yourself while raising a disabled child? Not the bubble bath kind of self-care—but the kind that starts with naming your anger, your grief, your jealousy, and not pushing them down just because “good parents don’t feel that way.”In this episode, Amanda Griffith-Atkins joins Alyssa and I to talk about her new book How to Handle More Than You Can Handle: Caring for Yourself While Raising a DisabledChild. Amanda shares what led her to write this book and how the book is structured to be helpful for busy parents of disabled children. Each of us also share sections of the book that we love. This book gives us the tools to explore radical acceptance, emotional self-compassion, and space to feel what we’re actually feeling. How to Handle More Than You Can Handle is out now on Amazon and other book retailers.Links:Get your own copy of Amanda’s book How to Handle More Than You Can Handle.Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming 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.Access the transcript on the website here. And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app!
--------
24:30
--------
24:30
Mindfulness for Medical Parents w/ Chrissy McGuire
Meditation might seem like a luxury when you’re managing meds, appointments, and survival mode. But for some of us, it becomes a lifeline.In this episode, Chrissy McGuire shares how mindfulness helped her survive the NICU, find her footing as a single mom to two disabled kids, and notice the small moments of joy that still exist in the chaos.Chrissy also leads us through a guided meditation, right inside the episode—a short, calming practice you can return to again and again, especially on the days that feel too heavy to carry alone.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Chrissy on Instagram @chrissy.mcguire_!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.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.
Ireland