Raising Rosie: The Rest of the Story

Melanie Kandzierski
  • 0.0 (0)
  • PARENTING
  • UPDATED WEEKLY

I’m Melanie, a Gen X mom raising my granddaughter Rosie, who lives with Dravet syndrome. This podcast shares the full, unfiltered story of caregiving, grief, palliative care, and parenting a medically complex child. No highlight reels—just truth, love, and the hard parts we usually keep quiet. Follow @raisingrosie_dravet on TikTok, IG, & Threads. Welcome to Raising Rosie: The Rest of the Story.

Episodes

  1. 12/26/2025

    The Keeper of Holiday Magic

    This wasn’t the Christmas I planned—but it ended up being exactly what someone else needed. In this final episode of the year, I’m sharing how a quiet day meant just for me and Rosie turned into something so much more when I realized my grieving niece had nowhere to go for the holidays. She’s pregnant. She’s heartbroken. And she’s trying to be a mom through it all. So I answered the call I’ve known my whole life as the oldest daughter and oldest granddaughter: I dusted off the holiday magic. I found the cherry cordials. I opened the Coca-Cola in glass bottles. I baked the cranberry muffins. And in doing that, I passed on something sacred—not just memories, but legacy. This episode is about what happens when joy and grief share a table. It’s about stepping into a new home, a new chapter, and recognizing the parts of yourself that survived the storm. It’s about building traditions from scratch, holding space for healing, and reclaiming your power in small, quiet ways. As we head into 2026, I’m holding tight to one truth: language is everything. Because when we name what we’re going through, we take away its power to isolate us. And that’s what this podcast is here for.

    9 min
  2. Redefining Holiday Magic: The Ghosts, the Grief, and the Grace

    12/19/2025

    Redefining Holiday Magic: The Ghosts, the Grief, and the Grace

    The holidays rarely go as planned—especially when you’re navigating grief, caregiving, and change. In this episode, I take you through the “Ghosts of Christmas Past” in our life—diaper blowouts with COVID, hospital discharges on Christmas Eve, pizza and Chinese takeout as tradition—and what it’s taught me about redefining joy. This isn’t about picture-perfect holidays. It’s about boundaries, bravery, and permission. Permission to protect your peace. Permission to say no. Permission to celebrate your own way—shrimp cocktail, fancy desserts, and all. At the heart of this episode is a gentle, but fierce reminder: you don’t need the holiday you thought you’d have to find the meaning that matters. You just need to believe in your version of the

    20 min

  3. 12/12/2025

    Inclusion Isn’t a Favor—It’s a Foundation

    What happens when inclusion is treated like a luxury instead of a basic right? In this episode, I peel back the layers of performative inclusion and bring us into the real, raw experience of fighting for access, dignity, and belonging as the caregiver of a medically complex child. From historical moments like the Capitol Crawl to personal stories about my local library and changing Rosie on public restroom floors, this episode is part history lesson, part emotional gut punch, and part rally cry. You’ll learn how features we take for granted—curb cuts, texting, captions—were born out of disability advocacy, and why inclusion isn’t just about disability. It’s about humanity. ✨ Plus: A shout-out to The Inclusion Effect podcast by Anna Kohl, where powerful inclusion conversations continue weekly. This isn’t about asking for too much. This is about asking for the bare minimum—and knowing you’re not alone.

    15 min

  4. 12/06/2025

    The Loneliness of Doing It All

    This one’s for every caregiver who has felt surrounded—but still alone. In this episode, I’m peeling back the layers of invisible labor that come with doing it all: parenting, caregiving, managing systems, surviving systems, and holding everything together with hands that never get a break. I talk about the illusion of help, the weight of performative support, and the breaking point that led me to a deeper truth—one I think many of us know too well. We’ll talk about what it really takes to make life “look manageable,” the difference between parenting and caregiving, and why well-meaning phrases like “God doesn’t give you more than you can handle” often miss the mark. This is the episode I wish I had in my darkest, most overextended moments—and maybe it’s one you need today too. You’re not too much. You’re just doing too much, for too long, without enough support. You are not alone.

    8 min

  5. 11/29/2025

    The Dreams We Didn’t Know We’d Have to Grieve

    Before we ever held our babies in our arms, many of us already carried dreams in our hearts. First birthdays and first days of school. Dance recitals and soccer games. College move-ins. Careers. Weddings. A life imagined. A future assumed. But when a diagnosis comes—when you’re told your child has epilepsy, or Down syndrome, or a congenital heart defect, or cerebral palsy—or a rare disease so uncommon you have to teach the doctors how to spell it—those dreams begin to shift. Sometimes they vanish. And no one really prepares you for the ache that comes with that kind of loss. This episode is about that grief. The kind that arrives before the meal trains, before the therapies, before the new routines. The kind that shows up long before acceptance or strength or even language. If you’ve ever found yourself grieving the version of motherhood you never got to have… this one is for you.

    6 min

  6. 11/26/2025 · BONUS

    Bonus Episode: A Safe Space for Thanksgiving

    This bonus episode is a soft place to land—whether you’re cooking a full spread, ordering takeout, or hiding out in the car for five quiet minutes. This year, for the first time since 2018, I cooked Thanksgiving dinner. Not because I had to. But because something in me wanted to. And maybe that’s what healing looks like—doing things you once thought you’d never feel like doing again. In this reflection, I share why I decided to cook this year, what it means as we prepare to leave Indiana, and how my new Christmas tradition might involve absolutely no cooking at all. This episode is a hug in podcast form. Come sit with me. And if you need a soundtrack for the day, there’s a weird little playlist on Spotify, too—with a little Mariah, a little Rihanna, and a whole lot of heart.

    6 min

  7. 11/20/2025

    You Don’t Need a Cape: Dismantling Toxic Positivity in Caregiving

    This one’s for every caregiver who’s ever been handed a superhero cape—when what you really needed was a break, a cry, or just someone to do the dishes. In this episode of Raising Rosie: The Rest of the Story, I’m talking about toxic positivity—how it hides behind well-meaning platitudes, how it shows up in the disability community, and how it makes space feel smaller when we need it to feel safe. We’ll unpack the difference between support and sugarcoating. We’ll talk about the silence that stings deeper than any words. And we’ll name what actually helps—ice cream, validation, and a friend who sees the whole truth. This isn’t about being ungrateful. It’s about being real. Because we don’t need medals or mantras. We just need to be believed.

    8 min

  8. 11/07/2025

    That Looks Beautiful… And It Hurts

    In this episode, I’m talking about something most of us feel—but rarely say out loud. I’ve had moments where I’m scrolling social media or sitting in a waiting room, and I see another family doing something simple: a spontaneous zoo trip, a beach day without a medical bag, a child running through a splash pad with no worries. And I feel it. That ache. That grief that lives under the surface. It’s not that I’m not happy for them—I am. But it still hurts to know that might never be our life. This episode isn’t about bitterness. It’s about being honest with ourselves. About what it means to witness the ease of others while carrying a weight most people don’t see. So if you’ve ever thought, “That looks beautiful. And it hurts to know it’s not mine…” you’re not alone. Let’s talk about it.

    8 min

  9. 11/07/2025

    The Two Girls That Needed Me

    In this first episode, I tell the story behind how I became a mother—twice. Not in the way most people do. This is a story that spans five generations, starting with my grandparents who were foster parents, to me becoming a mother to Faith, a medically fragile baby girl who would one day call me Mama. And then, years later, her baby—Rosie—who would call me Mama too. I talk about what it means to love someone you can’t save, how addiction and grief shaped my motherhood, and how my past with Faith helped prepare me for Rosie’s diagnosis with Dravet syndrome. It’s a story of G-tubes, grief, foster care, genetic testing, and getting on a plane with nothing but an empty suitcase and an open heart. This is for the women who became mothers in unexpected ways. This is for the ones who kept showing up, even while breaking. This is for the children who needed us—and the versions of ourselves we became for them.

    8 min

  10. SEASON 1, EPISODE 1 TRAILER

    Welcome to the Rest of the Story

    I’m Melanie, a full-time caregiver, medical mama, and accidental advocate raising my daughter Rosie, who lives with Dravet syndrome and a whole lot of spirit. You might know us from social media where I share our day-to-day life. But this podcast? This is where I get to tell the parts of the story I can’t always fit into a reel. This space is for the real talk. The emotional truth beneath the surface. We’ll explore complex caregiving, grief, joy, burnout, resilience, sisterhood, and the fierce hope it takes to keep going. This is for the moms like me who’ve had to become everything. Nurse, advocate, teacher, comforter. And still hold space for who they are or who they’re becoming. I’m so glad you’re here. Let’s talk about it. Let’s name it. Let’s say the things out loud. The rest of the story starts now.

    2 min

Trailer

About

I’m Melanie, a Gen X mom raising my granddaughter Rosie, who lives with Dravet syndrome. This podcast shares the full, unfiltered story of caregiving, grief, palliative care, and parenting a medically complex child. No highlight reels—just truth, love, and the hard parts we usually keep quiet. Follow @raisingrosie_dravet on TikTok, IG, & Threads. Welcome to Raising Rosie: The Rest of the Story.

Information