The Rare Life

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 o...

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 everyth...

A hospital admission. A seizure. A certain time of year. Sometimes your body can react to medical trauma long after the moment itself has passed. But when does that become PTSD, and what does that look like when the trauma is tied to your child’s medical care? In today’s episode, Amanda Griffith-Atkins joins us to break down the difference between PTSD, post-traumatic stress symptoms, and other tr...

Exercise can be a powerful coping tool, a way to feel stronger, and something that improves our mental health as parents of disabled children. But for those in our community, it can also be hard to access, hard to sustain, and just one more thing on our never-ending to-do list. In today’s episode, we’re talking about that tension: the ways exercise has helped so many parents cope with stress, ange...

Scrolling. Comfort shows. Exercise. Reading. Keeping yourself so busy you don’t have time to think. Numbing out can look a lot of different ways. In today’s episode, we’re talking about why medical parents numb out, especially during stressful seasons, before and after scary medical moments, and after long days of being “on” for everyone else. We also dig into the difference between numbing out an...

When your first child is medically complex, your experience can look very different from a “typical” parent. But sometimes, that’s only really apparent in hindsight. In today’s episode, we (finally!) have Amanda Griffith-Atkins on to share the story of her and her son Asher. From the first inkling that something wasn’t quite right to navigating conflicting messages and fears about the future to wh...

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people. This season, we’ll be talking about things like anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a “Debbie Downer” when you’re honest about the realities of this life. As always, we’ll also have story ep...

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it. In this episode, we’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most. If you’d like to help, send us a message on Instagram, on therarelife.org/co...

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities. That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and w...

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty. From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered p...

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it. From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for. A huge thank you to our sponsor for this summer season, Real Food Ble...

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic. From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode. A huge th...

Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences. A huge thank you to our sponsor for this summer se...

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated. Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside. A huge thank you to our sponsor for this summer season, Real Food Blends!...

For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation. In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane...

The dads deserve a village too. In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for peop...

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 makes summer uniquely hard for our families, and the parts of summer we still love anyway. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real...

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...

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 ch...

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...

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 navigati...

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...

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...

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 con...

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), complicated feelings can come up. In this episode, Madeline and Alyssa talk about the emotional, logistical, and financial reality of living with medical and mobility equipment. From the grief that can show up...