The Rare Life

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 back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also sharing listener reflections, talking through the clips from all 14 episodes, and discussing why this season felt especially deep for our community.
And finally, we’re sharing a few personal and behind-the-scenes updates, including Madeline preparing to become a foster parent, Alyssa editing with a broken foot, and a peek at the summer mini episodes coming next.
Thank you for listening, sharing your stories, and being part of The Rare Life community. We’re so grateful you’re here.
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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 and medically complex kids. And honestly? That can feel terrifying.
In this episode, we're exploring one of the hardest topics parents in this community navigate: preventing abuse and neglect for children who may not be able to fully communicate what happened to them.
We talk about the fears parents carry, missed medical care and hospital concerns, building trust with other caregivers, red flags families watch for, and the real-life strategies parents use to try to keep their children safe.
If you’ve ever wondered how to balance protection with independence, trust your gut when something feels off, or navigate the reality that you can’t always be there, we hope this episode gives you a little guidance to get started.
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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 life.
Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process?
In this episode, Alyssa and Madeline explore the tension many caregivers feel between wanting the world to better understand disability and wanting to protect their child’s privacy, energy, and family life.
They talk about awareness versus advocacy, the pressure social media creates to constantly educate others, the guilt parents carry when they don’t share publicly, and how many families’ relationships with awareness evolve over time.
If you’ve ever wondered whether sharing your child’s story is helping, hurting, healing, or just exhausting, this episode will give you a lot to think about.
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Listen to Ep. 100: Raising Awareness | DisabledChildren Don't Owe Society Anything!
Listen to Ep. 219: Handling Questions fromStrangers About My Disabled Child!
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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, inclusion, and what your child can realistically access.
In this episode, Alyssa is joined by Rachel, a special education professional and fellow disability parent, to talk about the realities of navigating school options for medically complex kids. The types of schooling options available, the differences between these options, support shortages, IEPs, inclusion, and the emotional toll of having to constantly fight for the support your child is legally entitled to.
If you’ve ever felt overwhelmed trying to figure out the “right” educational setting for your child, this episode is here to offer you some hope and clarity!
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Listen to Ep. 222: Intellectual Disabilities!
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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 progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?
In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the background of every illness, to the reality of navigating ER teams who don’t know your child, to the emotional whiplash of being hyper-focused in the moment and unraveling later.
We talk about how these decisions evolve over time, what experience teaches you (and what it doesn’t), and why “better safe than sorry” doesn’t even begin to capture the full picture.
And a big thank you to Functional Formularies, our sponsor for this episode.
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Learn more about Functional Formularies!
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Listen to Ep. 185: Medical Parent Trauma!
Listen to Ep 170: Hospitalizations!
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