The Rare Life

• 190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking

  Sometimes the only place big enough for the weight you’re carrying is the side of a mountain. That’s where Colleen—and dozens of other moms—learned how to let it out.In this episode, Colleen tells the story of her son Owen’s explosive onset epilepsy, her family's long search for answers, and the brain surgery that changed everything. She opens up about the loneliness of being undiagnosed, the emotional whiplash of unexpected good news, and the identity shift that comes with raising a child with complex needs.We also talk about how Electric Love retreats came to be and why sometimes the most healing thing you can do is a tough hike with people who get it.Also, a big thanks to Kate Farms for sponsoring this important episode! Links:Learn more about the many products Kate Farms offers forour formula and tube-fed kids!Learn more about Electric Love Retreats!Listen to Ep 183on Epilepsy with Hailey Adkisson.Follow Electric Love on Instagram @electric_love_retreats!  Follow Colleen on Instagram @raising_owen!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.Access the transcript on the website here. And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app! 

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• 189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-Atkins

  Grief around our children’s disabilities can take many forms. Some of us are grieving the life we thought we’d have with our child that looks so very different now. Others of us are grieving the very real possibility of losing them too soon.In this episode, therapist and fellow disability parent Amanda Griffith-Atkins joins me to talk about the complicated grief that comes with raising a disabled or medically complex child.We explore how this grief can morph and change, how it shows up in the quiet, ordinary moments, and how deeply human it is to wish things were easier —not because our children aren’t loved, but because they so deeply are. We also talk about why shame so often gets tangled up in these emotions, and what it looks like to let yourself feel without guilt.Also, a big thanks to Kate Farms for sponsoring this important episode!LinksLearn more about the many products Kate Farms offers for our formula and tube-fed kids!Follow Amanda on Instagram @amanda.griffith.atkins!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!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.Listen to previous episodes with Amanda:Ep 182 on HobbiesEp 171 on Financial StrainEp 159 on Sharing the Mental LoadEp 156 on Getting a DivorceEp 153 on Hurtful Things Loved Ones SayEp 147 on Sex and Disability ParentingEp 142 on If My Disabled Child Outlives MeEp 135 on Career and Family RolesEp 132 on Self-CareEp 131 on Chronic StressEp 130 on Anticipatory GriefEp 99 on Family PlanningEp 85 on Parental IdentityEp 81 on Health Anxiety& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.

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• Mini-episode: Why We Are Delaying Our Next Few Episodes w/ Alyssa Nutile

  For the first time in The Rare Life history... we need a little extra time to work on the next few episodes. Not because we haven’t been preparing and planning, but because some current events have thrown a wrench into the works.In this episode, Madeline and Alyssa talk generally about some of the recent events that have come up, how the community has been feeling about it, what it says about the world we’re living in right now, and why some of the upcoming topics needed just a little more time and context before they go out into the world.Join us for this quick mini-episode and check back next week for your regularly scheduled content! LinksJoin 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!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.

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• 188: Belief Systems + Ways They’re Affected by Disability Parenting w/ Ali, Bethany, Melissa, and Rachel

  When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways.Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never really existed at all.This episode has something for absolutely everyone, no matter your religious or spiritual background, and I’m so proud of how open and respectful each of these women were as they shared their stories. This is one episode you can’t miss!Also, a big thanks to Kate Farms for sponsoring this important episode! LinksLearn more about the many products Kate Farms offers for our formula and tube-fed kids!Listen to Episode 83 Part 1 & Episode 83 Part 2 to hear An Evolution in Faith with Kimberly Arnold.Follow Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis on Instagram!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!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.

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• 187: Do You Miss Who You Used to Be Prior To Disability Parenting? w/ Alyssa Nutile

  For a lot of us, the answer isn’t simple. You can miss your lighter, less-traumatized self and feel proud of who you’ve become.That’s the tension so many of us sit in as medical parents: grieving the carefree, well-rested version of ourselves while also seeing strength, resilience, and depth we didn’t know we had.In this episode, I’m joined by Alyssa Nutile to unpack the big, messy feelings that come with identity loss, personality shifts, and how we change when our child’s life is on the line, plus the unexpected ways we’ve grown and adapted.Links:Hear Alyssa’s other episodes: 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 140: Alyssa’s Story, 125: Travel w/ Disabled KidsFill out our contact form to join upcoming discussion groups!Follow Alyssa at @caffeinated_caregivers!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!

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