There’s this moment in every parent of a rare or medically complex kid’s life, where you suddenly realize that the medical team you’re working with doesn’t know everything and might not know how to make the best medical decision for your child. It’s terrifying... but it also feels a little bit like a rite of passage by now, and you can only hope that the way you find this out isn’t through pain and trauma for your child.  In Alyssa’s case, her daughter and her family weren’t so lucky. In...

As necessary, important, and life-changing as in-home nursing can be, there’s nothing simple about it. While there are a ton of benefits, there are some really tough parts too. It’s an added layer of administration to deal with, extra personalities in your home to handle, more routines to train, and can come with a lack of personal space. And acknowledging those downsides can feel tricky too, when many families don’t have access to nursing at all. In Ep 139 of the Rare Life, I sit down with...

If you’ve been around in the medically complex world for a minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?” Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve endured comparatively. In Ep 138 of The Rare Life podcast, Liz breaks down the different types of therapy parents and caregivers of medically...

Not all of us have or will experience the loss of a child, but we ALL have to navigate some type of grief and loss in our lives. I know this sounds heavy, but in today’s episode grief expert Cole Imperi and grieving mother Leah Deason and I have a frank but honestly kind of soothing conversation about the way grief and loss shape our lives, and how we can move through traumatic moments by understanding and embracing our grief. Even if you don’t feel like you’ve experienced a...

Having to rely on a medical device for your child’s survival is equal parts frustrating and terrifying. It’s not that we aren’t grateful that the technologies exist to keep our children healthy... but medical devices aren’t fool-proof, and when things go awry, it’s traumatic for everyone involved. In today’s episode, Bethany Beazley shares her experience of receiving her son’s diagnosis and how her family’s life changed in the blink of an eye when her son William was given a tracheotomy...

Whether you're trying to manage a career and care for a medically complex child, or you've had to suspend your career for the sake of your family, none of us can escape the impact of this rare and medically complex life. In Ep 135 of The Rare Life, Amanda Griffith-Atkins and I share responses from listeners about the ways their careers have been impacted by having medically complex children, and all of the feelings that come up for us around that. It’s certainly not as simple as “Well, I got...

Losing a child isn’t something any of us want to think about... However for some of us, we know that we don’t have the luxury of putting off planning the logistics around the end of our child’s life. But where do you even start?   In today’s episode, bereaved mother Leah Deason, pediatric hospice nurse Gina Thuene, and Tiffany Goodchild, a mother who has dealt with hospice care, share their experiences with us to offer a guide for parents who may find themselves preparing for the loss of...

Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother. In this episode, she shares with us just how lonely and alienating parts of her journey have felt, both as a single mother and as the mother of a medically complex child whose...

Is it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spa treatments. So what does self-care look like (in the most feasible and east cringy way possible)? In today’s episode, Amanda Griffith-Atkins is back one more time to discuss this topic. We share all the...

Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies. From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharing all the ways chronic stress has manifested physically in our bodies in today’s episode....

Every parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality.  When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose our child colors everything from the way we interact with those around us to the choices we make when it comes to structuring our lives. In...

Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough” or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her daughter Eleanor’s rare diagnosis. In today’s episode, Maddison shares with me how, despite her family’s struggles, she’s still had trouble...

We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you.   As with each kickoff episode, I’m also sharing a little glimpse into the topics we’re diving into this season (we’ve got some heavy ones, but we’re balancing it out with content that’ll make these tough topics...

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now. In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways...

I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening. In this solo episode, I divide out disabilities...

Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day. In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best...

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 with the best of the best. In this conversation with famed disability activist, speaker, and...

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 a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8...

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 survive childhood. She also shares ways that she has become a stronger, more gratitude-filled and...

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 adding to our family, how can we endure the anxiety that would likely flood us during a subsequent...

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-changing news and what we’ve decided to do about it. *This is a rebroadcast of one of my favorite...

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 keeps her up at night and the things she does to try to get a little more sleep. *This is a...

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 possible. Sam Keirsey is one of those such exceptional nurses. In this episode, she shares...

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 what it’s like behind the scenes, how I plan and run the podcast, and how I handle the sometimes...

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 homelife, it can become too much, and not just for us, but our kids that are supposed to be...