The Rare Life

Shanna was parenting a toddler when her second son, Levi, was born with a brain injury and received an HIE diagnosis that changed everything. Between his medical needs, constant appointments, and trying to understand why he was so uncomfortable, that first year felt like pure survival mode.
In this episode, Shanna shares what it’s been like navigating the uncertainty of Levi’s disabilities, the guilt of feeling like she’s never doing enough therapy, the complicated feelings around parenting a disabled and nondisabled child, and why learning to accept help has been so important for her whole family.
Also, Sticker Club is live! You give us a donation, andwe send you thank you stickers! Learn more here!
 
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Learn more about Medicaid waivers in your state.
Listen to Ep 139: The Ups and Downs of Nursing Support.
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Yes, disability parenting changes us, but experiences we bring into disability parenting shape the way we navigate this life too!
In today's episode, we're unpacking the baggage we bring into disability parenting, from mental health and childhood trauma to family relationships, religion, and our own experiences with disability. Along with stories from parents in our community, we explore how these experiences influence everything from trusting caregivers to advocating for our kids.
We also dig into how our past can make certain parts of this life harder, give us tools to navigate it, or sometimes both. And why even years of experience with disability can't fully prepare you for parenting a medically complex child.
A huge thank you to our sponsor, Real Food Blends!
 
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See our sticker designs this week on Instagram ⁠@the_rare_life⁠!
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Learn more about our sponsor Real Food Blends!
Listen to Ep. 215: Behaviors | Isolation, Guilt + Why It's Not About "Control."
Listen to Summer Mini #7: Why Asking for Help Feels So Hard.
Listen to Ep. 227: Abuse and Neglect Safeguards | Who We Can Trust + How to Protect OurDisabled Children.
Listen to Ep. 188: Belief Systems + Ways They're Affected by Disability Parenting.
Listen to Ep. 40: Wendy + the Sibling Experience.
Listen to Ep. 235: Ways Our Identity is Impacted by Having a Medically-Complex Child.
Listen to Ep. 135: Careers + Family Roles | The Ways They've Been Impacted by DisabilityParenting + The Resentment We Feel.
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Did my body fail my child? Did I do something wrong? Could I have prevented this?
You don't have to be a genetic carrier to grapple with the complex feelings around whether you somehow caused your child's disabilities or medical complexities. So many of uscan carry this uncertainty and sometimes even unspecified guilt around these feelings.
In today's episode, we're digging into these complicated feelings, along with experiences shared by parents in our community. From finding out you're a genetic carrierto birth injuries, medical decisions, and spontaneous genetic mutations, we talk about the many different ways these feelings pop up for parents.
And a big thanks to our sponsor for this episode, themakers of the incredible documentary, The Zebra & The Bear!
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Watch The Zebra & The Bear
Listen to Ep. 22: It's All My Fault.
Listen to Ep. 191: Abortion + Parents of Disabled Kids.
Listen to Ep. 77: To Those Who Cannot Say, "I Wouldn't Have Them Any Other Way"
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Who are you when so much of your life revolves around caring for your child? For parents of disabled and medically complex kids, our identities can shift in some pretty significant ways, and figuring out who we are in the midst of it all isn't always easy.
In today's episode, Madeline and Alyssa dig into the ways disability parenting shapes our sense of self. We talk about grieving parts of who we used to be, discovering new things about ourselves, and what it looks like to embrace an identity we never expected to have.
We also explore the pressure to fit a certain mold as a disability parent, how our identities become intertwined with our children's, and what happens when caregiving is a lifelong role. It's a big, complicated topic, and one that looks a little different for everyone!
Also, a big thank you to Functional Formularies, our sponsor for this episode.
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Learn more about Functional Formularies!
Listen to Ep 85: Should A Child’s Disability be Part of Their Parent’s Identity?
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When Carolina’s daughter Cruz was just days old, newborn screening revealed she had maple syrup urine disease. Almost overnight, Carolina went from first-time mom to managing hospital stays, oxygen, G-tube feeds, and a condition that could become dangerous very quickly.
In today’s episode, Carolina shares what those early years looked like, including the hypervigilance, the pressure to get everything exactly right, and the fear that if she relaxed even a little, something bad would happen.
We also talk about the decision to pursue a liver transplant after years of managing Cruz’s condition, and what life has looked like on the other side. From finally sharing cultural foods with Cruz to finding snack crumbs in the car seat, Carolina reflects on the small, ordinary things that can feel huge after years of medical complexity.

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