The Rare Life

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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Listen to Ep. 185: Medical Parent Trauma!
Listen to Ep 170: Hospitalizations!
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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 that no one, including their doctors, knew much about.
In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the only option, and what it’s been like to live with that choice as the disease continued to progress.
We also talk about what advocacy actually looks like long-term: fighting the same systems over and over again, pushing back when care is taken away, and the strange mix of exhaustion and purpose that comes with it.
This is one episode you won’t want to miss!
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Listen to Ep 180: Does It Get Easier?
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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 an intellectual disability in that world?
In this episode, Alyssa, Amanda, and Madeline get honest about all of it: the grief that's hard to express, the fear that you won't be able to connect with your child, and the ways people with intellectual disabilities get left out, even within disability spaces.
Plus, they dig into the nuance behind "presume competence," the disability hierarchy often felt in the backdrop of these conversations, and what radical acceptance actually looks like in lives like ours.
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Listen to Ep 19: Katie's Story!
Listen to Ep 166: Nonspeaking Child!
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