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Summertime Feels, Disability Ed. (Summer Mini #1)
It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings. Today, we’re digging into all of that: how we feel about summer, what…
S13E228 228: Season 13 Finale | Biggest Impacts, Hardest Listens, + A Special Guest
Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground.In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listener and mom to Miles, to look…
S13E227 227: Abuse and Neglect Safeguards | Who We Can Trust + How to Protect Our Disabled Children
Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to help care for our disabled…
S13E226 226: Should I Be Raising Awareness About My Child’s Diagnosis?
For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming…
S13E225 225: Schooling Options for Disabled Kids | Advocacy, Access + Emotional Toll of Navigating Tough Choices w/ Rachel Redmond
For many families of disabled and medically complex children, school is rarely a simple decision. It’s a constant balancing act between medical needs, safety, transportation, therapies, staffing,…
S13E225 224: Emergencies & ER Visits | Making the Call, Coping with “What Ifs” + Survival Tips
For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life.Every time something seems off and feels like it’s…
S13E223 223: Noelle’s Story | A Terminal Diagnosis, Making Decisions Without a Roadmap, + Longterm Advocacy
Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be facing a progressive, terminal disease…
S13E222 222: Intellectual Disabilities | Complicated Grief, Stigma, and Shifting Perspectives w/ Amanda Griffith-Atkins, Madeline and Alyssa
From an early age, most of us are taught that being “smart” matters. It’s tied to the way society measures and views success, independence, and worth.So what happens when you're raising a child with…
S13E221 221: Equipment for Our Medically Complex Children | Grief, Gratitude, and Everything In Between
At face value, our kid’s equipment is just stuff. It helps our kids move, eat, hear, breathe, communicate, and more. But when that “stuff” feels like it’s taking over our lives (and homes),…
S13E220 220: Robin’s Story | Preparing for the Worst, Staying Present, + Embracing a Different Type of Fatherhood
Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding started to unravel.In this episode, Robin…
S13E219 219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child.…
S13E218 218: Moms vs. Dads in the Medical System | Dismissal, Assumptions + the Cost of Not Being Trusted w/ Kyrie Herman
For most of us who have spent years inside the medical system with a complex child, the experience of being mom in an exam room can feel very different from the experience of being dad. Sometimes…
217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline
For many disability parents, medically complex life begins in the NICU. In those early days, everything feels heightened: the machines, the uncertainty, the helplessness of watching doctors care for…
S13E216 216: Cindy's Story | Survival Mode, Unexpected Grief + Navigating Inclusion and Accessibility
When you’re raising a child with complex medical needs, the early years can feel like one long stretch of survival mode. Hospital stays, surgeries, therapies, and constant uncertainty loom large over…
S13E215 215: Behaviors | Isolation, Guilt + Why It’s Not About “Control” w/ Annie and Katie
For a lot of disability parents, the behavioral side of our child’s diagnosis often gets judged the fastest and is understood the least. It’s also another part that can make us feel like we’re…
S13E214 214: Relocation for Better Support | All the Factors to Consider + Complicated Decision-Making w/ Madeline
For families of medically complex kids, where you live can determine what services your child gets, whether you can be paid to care for them, how long you sit on a waitlist, and whether the world…
S13E213 213: Deonna’s Story | A Childhood Injury & Stroke + Healing After Sudden Life Changes
Many of us start our disability parent journey early in our child’s life, with signs that something is medically awry sometimes as early as birth or in utero. But that’s not the story for Deonna.…
S13E212 212: Surgeries | The Feelings We Have Before, During, and After + How Families Cope w/ Madeline
Surgery of some kind or another is a near universal experience for medically complex kids. (And yes, procedures that involve anesthesia or something similar count too!) And these experiences don’t…
S13E211 211: Trachs & Vents | Fear, Hypervigilance, & Finding a New Normal w/ Ashley Caywood
What does it mean to bring home a child whose breathing depends on a piece of medical equipment? For many families, the idea of a trach is terrifying long before it ever becomes reality. And even…
S13E210 210: Receiving Judgement for Disability Parent Decisions w/ Madeline
Living a medically complex life means making constant decisions under a microscope. About treatments. About schools. About rest. About what’s “enough.” And no matter what you choose, it often feels…
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The Rare Life has published 301 episodes since January 1970, covering topics in Kids & Family, Parenting.
The Rare Life is currently highly active with new episodes weekly. Average episode length is 40m.
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