The Rare Life

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent. But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic wit...

We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain. In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on...

Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal. In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not surv...

When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated. We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with addi...

Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life. It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes. Listen to find out what it was like to receive this life-chang...

There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future. In this episode, Jill shares what ke...

NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as...

It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston. This finale is a little different from seasons past because we’re not just celebrating another season, it’s also the third anniversary of the podcast. To honor that milestone, I’m answering a ton of questions with Juston from this community about w...

Most parents, myself included, fall into this trap when we first bring our medically complex kids home: We want what’s best for them, and that usually feels every type of therapy we can get (OT, PT, Speech, and more!) And if some therapy is good, then more is great, right?! But after months or years of running from one therapy session to another, often while juggling school, siblings, work, and ho...

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, Alyssa Nutile and I share the best tips and tricks from The Rare Life community, plus a few of Alyssa’s own tips from...

Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position. Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of...

**This is the voiceover version. There are two versions of this episode! One where you can hear directly from Hannah, and one where we used an AI voiceover. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation! Have you ever given much thought to the terminology we use to describe ou...

**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation! Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inco...

Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period. Making that process more difficult is the fact that many of the individuals working in those systems, like special education professionals and therapists, aren’t actually parents of disabled children if they even have children at all. And because of this, c...

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. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the imp...

If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth. Those early days are s...

Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well. When it comes to dealing with doctors and other specialists, it can sound like they’re speaking a different language, and we are often coming to the table from two very different perspectives. So in tod...

When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges. And as it turns out, I’m not alone with that feeling! So today’s episode is a community-collaboration. On Instagram, I asked for...

Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced. So often, the feelings that come up on these days feel overwhelming and unavoidable. But you are not alone. Today, I’m sharing my conversation with Hailey Adkisson and Madhura Katre, two moms...

Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around. So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked pare...

Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her. Before Melanie received her son’s diagnosi...

Society’s values are slowly shifting away from a focus on physical beauty toward intellect instead. We’re taught that academic and intellectual achievement is so valuable, maybe even one of the most valuable things we can accomplish. On the surface, that might feel like a good thing, but where does that leave our children with intellectual disabilities? In today’s episode, Marci Dunning shares wit...

For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life. After all, that’s what they kept hearing from many medical professionals when Eloise had difficulty tolerating formula after formula. But as Cassie discovered, highly processed formulas aren’t the only option available for many tube-fed kids. After working with H...

For the first part of Abby’s pregnancy with her son Jackson, everything was perfectly uneventful. But at her twenty-week ultrasound, her medical team discovered some unusual markers. This appointment set off a chain of visits, tests, and specialists that eventually ended in a diagnosis of a rare and life-threatening form of skeletal dysplasia called osteogenesis imperfecta. In this episode, Abby a...

We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks, trauma-versaries, grief and acceptance for our child’s disabilities, and more. For the last six seasons, we’ve been using the same pattern and order for planning episodes, and I’ve been really comfortable with that structure. BUT I want to giv...