The Rare Life

Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower...

There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN. Also,...

After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down. In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanes...

Birthdays, as we understand them societally, are a time for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation to reminders of difficult hospital stays to a resurgence of anticipatory grief. In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorr...

If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer trave...

If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer trave...

When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then. Today, I’m sharing thoughts from this community on what they wish they could go back and say...

We’re finally rounding out Season 9, and what a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser. In t...

When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities. In this episode, Brianna, a mom of disabled son who went on to have another nondisa...

After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!” While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this e...

Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)   In this episo...

Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought. But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis fo...

Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born. In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her...

Making the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships. So how do you know if divorce is an option, and where do you start if you’re exploring that possibility? In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce bet...

When her son Jeremiah was first born, Aneesa had no medical training or experience. But as it became clear that something was out of the ordinary with Jeremiah’s health, she did what so many of us do when our kids need support: she started advocating and asking questions. Eventually through her research and advocacy, her son was diagnosed with a rare life-limiting mitochondrial disease, TK2D...

As heart-breaking as it is, if you’ve been in the rare disease community for long enough, you probably know someone, maybe even someone close to you, who has lost a child. And because that potential reality looms large for so many of us, this loss can affect us as well. In this episode, Rose Watson, whose daughter Lavender has Trisomy 18, joins me to discuss her experience of maintaining a relatio...

Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone. In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from thos...

Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating gu...

We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how...

We talk all the time about our disabled children in this space... But what about their non-disabled siblings? In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!) Megan Schneide...

Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal! If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish? Get more info at https://therarelife.org/fundra...

Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a li...

Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share! If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier! Get more info at https://therarelife.org/fundraiser . Thank you so much, friends!   Links: Join us for The Family + Friends Rare...

Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside. So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Ka...

If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone!  We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life. The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So...