The Rare Life

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 to that earlier version of themselves who was just beginning on their medically complex journey.

I’m so excited to kick off our summer minis with this heart-warming episode.

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 this episode, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 9. We’re also sharing the most popular episodes of the season, just for some comparison (it’s not always the ones you might expect!)

Finally, we’re giving you a glimpse into Season 10 and the all-new summer format we’re trying out, as we publish some lighter mini-episodes in the off season this summer.

Thank you so much for being here and supporting The Rare Life for 9 seasons now! We would not be here without you. Let’s dive in!

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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 nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that came up for them after having a nondisabled child after their disabled child.

And we end the episode by reiterating the honor and privilege it is to be able to raise our nondisabled and disabled children alongside each other, while still the conflicting emotions that come up for us.

This episode is so poignant and full of so many thoughtful reflections. Don’t miss it!

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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 episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndrome.

She shares what her family grieves the most (and it’s a little surprising), how her disabled and non-disabled child interact and grow together, and what it’s been like for their family as she continued her career and her husband stayed home as a full-time caregiver for their children.

This episode has ALL the feels. Let’s dive in!

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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 episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull back the curtain on what it was like for them to find a better way to share the mental load that comes with parenting their medically complex child.
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They share the ways they improved their communication, helped each other take equal responsibility and ownership of medical decisions, and built trust that they could each handle situations that would spring up suddenly. Amanda also offers some actionable tips for other families with medically complex children.
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If you’ve been trying and struggling to find a balance that works for your family, this is an episode you can’t miss.

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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 for a disease that will eventually kill them.

In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering that her son Rudy has Lama2 Muscular Dystrophy, a disease that is progressive and life-limiting.

Serena walks us through the emotional rollercoaster of her son’s first few months, as well as the conflicting feelings that have come up for her in the way that she both embraces her son’s disability and grieves the pain of knowing his disease will likely take his life.

This episode is SO REAL and raw. It’s one you can’t miss!

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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 own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B).

We dig into all the aspects of befriending and maintaining friendships with parents who don’t have disabled children. We cover the logistical difficulties, the triggers that come up for us, the beautiful parts, and how to stay empathetic to those who are experiencing the world so differently from us.

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 between parents of medically complex kids and read experiences shared from the community of other women who have already separated or divorced their partners. We talk through fears, hesitations, and some options that you might have if you feel like divorce is in your future.

Whether or not you’re considering separation or divorce, we hope you leave this episode feeling capable and empowered!

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.

In this episode of The Rare Life, Aneesa shares the new skills she had to learn as she was thrust into the medical world, the grim prognosis her family received about Jeremiah, and the bright spots that keep them going. Aneesa also shares why she’s so passionate about documenting Jeremiah’s life and how she’s raising her other three boys in addition to her medically-complex son.

This is a sweet, tender episode you won’t want to miss!

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 relationship with a friend who lost a child and how that experience impacted her and her friend individually.

We also share thoughts from parents who have lost children on how they would like to be supported by their community (spoiler alert: don’t forget about their child or act like their child never existed), and finally we discuss the way deaths in the community reach far beyond just the families of these children.

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 those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth repairing.

Because while hurtful words from our loved ones are often grounded in their own unresolved baggage... sometimes, we discover someone's true character, and it can be a relationship ender. This is one episode you won’t want to miss.

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.
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In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating guilt, fear, and her new normal after discovering that her son Payton had a stroke in utero. Stephanie speaks to the journey so many of us have been on and are still on, as we attempt to process the medical trauma we’ve endured with our children, while never really getting a break from it.

This episode is so real and honest. You won’t want to miss it.

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?
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In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how to create REAL, connective friendships with other parents of disabled kids. We chat about how to go about creating these fulfilling friendships, how to take your current friendships to the next level, AND how to figure out if they are someone you *should* pursue friendship with.

Plus, we talk about how sometimes you can make these friendships on the internet and how some of your best friends can be people you’ve never even met IRL.

Is there a place for friendships with people who *don’t* have disabled kids too? Absolutely. But there’s also a need for friendships with people who truly get your life, and that’s often the other parents who are living this medical life with us.

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 Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these tender thoughts from some of the other kiddos in our lives.

This episode is so raw, so heart-wrenching, and so sweet. You can’t miss it.

 Also, it's the last day of our Family and Friends fundraiser! Don’t forget to promote your own fundraisers one more time (or start one just for today and see how much you can raise!

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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?

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 life-altering rare disease.

This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today.

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!

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.

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 in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.

Amanda Griffith-Atkins is once again here to help us sort through the conflicting feelings and causes behind these sex struggles, and she also shares several tips for reclaiming your sex life after disability parenting. This spicy episode is one that soooo many of us can relate to. Don’t miss it!

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When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.

So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness, and the ways that they and their partners each coped differently in the wake of their children’s diagnoses.

These dads are so vulnerable and honest with us, and this episode is an absolute must-listen for anyone with a rare disease dad in their life!

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When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting diagnosis of childhood dementia, and Ashley’s family was turned completely upside down.

In this raw and real episode of The Rare Life, Ashley shares what it was like to receive her daughter’s diagnosis, the ways this revelation altered her family, and how she’s found new and fulfilling relationships in her life since then. And while Ashley’s found a new way to look at life, she also shares openly and honestly about her grief and how she’s navigated through her complicated feelings.

It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy!

Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first major fundraiser, and if it goes well, we could raise funds to keep running this podcast and supporting and uplifting you for the entire next year! And the best part is we’re not asking for a single cent from you, our listeners. Instead, we’re empowering you to tell your own story and offer an opportunity for those close to you to support you by supporting us. It’s a win-win!

As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you.

Thank you so much for being here and supporting The Rare Life for 9 seasons now! We’re so excited for this slate of episodes. Let’s dive in!

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There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether.

Whichever way your family chooses to navigate these difficult circumstances is totally valid, and in this episode, Amanda and I share experiences from listeners on how they make it through these moments. We cover feedback from how awful it feels to be inpatient during big events to practical tips to celebrate when you’re in the hospital to encouragement on handling these tough situations in whatever way is easiest and safest for you and your family.

A big, big thank you to all our listeners who sent in tips, clips, and feelings to share with everyone. We used all of your feedback to create this episode, and we are so grateful!

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No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.

In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events.

We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible.

Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible!

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When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.

And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.

In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.

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We’re closing out Season 8, and this time I have Alyssa Nutile with me to celebrate the end of another successful season. The Rare Life went through some major changes this past year (if you remember from the Season 8 Kickoff – we're a nonprofit now!) And that meant we spent a ton of time working behind the scenes on some really exciting projects to keep us going for years to come.

We dive into all those details alongside our usual recap of episode clips and insights from three listeners from around the world on their favorite episodes of the season (and why they love The Rare Life so much!) We also review the most popular episodes of this season, and some of them were a little surprising! And finally, as always, we share a few glimpses into Season 9, which we can’t wait to share with you in January.

This episode was such a fun conversation and great way to round out the end of the year. Thanks for another amazing season, friends. See you in the new year!

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What happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone?

In this episode, Amanda Griffith-Atkins and I tackle this tough reality. We share notes from this community from all the feelings that come up around leaving our child alone in this world to the many questions we have about planning for their care once we’re gone. We don’t have all the answers, but we do try to leave you with a few hopeful thoughts by the end of this episode. And if nothing else, you can know that you are not alone in your fears and uncertainty.

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When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways.

Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never really existed at all.

This episode has something for absolutely everyone, no matter your religious or spiritual background, and I’m so proud of how open and respectful each of these women were as they shared their stories. This is one episode you can’t miss!

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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 this episode, Alyssa Nutile, mom (and also producer for this podcast!), shares the traumatic story of Gemma’s first few weeks of life, from a misdiagnosis, multiple unnecessary brain surgeries, and a lot of doctor conflict. This lost time and unneeded pain cuts especially deep, considering her daughter has a life-limiting prognosis. 

Alyssa also shares how, despite everything, she’s found a way to work with her daughter’s medical team, albeit much more cautiously. And, at the end, she tells her side of the story for how she started working for Madeline and The Rare Life!  

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 Brooke Teremi, Caitlin Castro, and Nicole Dennis, all of whom have or had in-home nursing care, to discuss many of the harder parts of in-home nursing, and why so many of these issues are systemic instead of individual problems.

If you have in-home nursing and feel like you need a little vent sesh, this is the episode for you.

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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 complex children can benefit from and also how to access those therapies, including acknowledging the many barriers and providing workarounds for those of us who want therapy, but don’t know how to make it fit in our lives. If you’ve been curious about therapy but aren’t sure where to start, this is the episode you need.

Also, a big thanks to our sponsors for this episode: The Nettle Families in honor of The Steitz Family, who lost their son Logan during pregnancy to a rare genetic syndrome CDPX1

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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 traumatic loss yet, I think you’ll find something in this conversation for you, because grief is universal, but it doesn’t have to be scary.E Stephens families. in 2021, they lost their sweet grandson Logan en utero to a rare genetic syndrome. This episode is lovingly dedicated to Logan Reid Steitz and to his dear parents Brittany and Matt. Their grief of losing Logan will forever keep him in their hearts.

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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 shortly after his birth.

While William’s trache helped him to breath well most of the time, he had more than one terrifying incident when his trache didn’t function as planned. Bethany explains, in heartfelt detail, the emotional fallout from those moments, and how her perspective of disability has changed through her experience. You won’t want to miss it.

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 to keep working, and that’s great,” or “I had to quit, and I’m sad.” There are serious emotional and mental ramifications to both, from resentment to grief to gratitude and everything in between.

This episode isn’t so much about career advice as it is to offer you some solidarity and a little virtual hug, as we all try to untangle the tricky emotions around the way our children and careers have intersected.

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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 their child. We talk about the hospice system, decisions that you can make ahead of time to make the end of your child’s life smoother and more peaceful, and what the process of losing a child can look like. 

TW: This episode will discuss child loss and the logistics of planning for such an event in gentle but frank terms. If this topic is triggering for you, consider saving it to come back to or listening in smaller segments to give you time to digest this heavy material. 

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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 needs are very different than many of his peers. Bek also shares how her life and the way she must care for her son have changed as he’s gotten older. Bek’s speaks so vulnerably, and I can guarantee that there’s something here for everyone, even if your life circumstances differ. I can’t wait for you to hear her story.

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 thoughts and feels from this community on “self-care” and especially how it feels so inaccessible to us as parents of children with rare diseases. Amanda and I also discuss how we can redefine self-care in a way that’s actually helpful to families in our position.

If you’ve been feeling tired, burned out, and honestly, so done with the traditional *SeLf-CaRe* advice, you’re not going to want to miss this episode.

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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. Amanda Griffith-Atkins joins me once again as we discuss the impact on chronic stress and some of the ways that we can try to minimize its effects.

We don’t have the solution to every issue chronic stress causes, but we see you and we’re right here with you trying to figure it out for ourselves too.

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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 today’s episode, Amanda Griffith-Atkins joins me once again to explore the fears around child loss and the anticipatory grief that so many of us carry. We share contributions from members of our community covering everything from fears of all the different ways we could lose our children to dealing with the ever-present grief of knowing that our children might not outlive us.

This episode is here to offer you some solidarity and assurance that you’re not alone when it comes to coping with this heavy topic.

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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 feeling like she belonged in the medically complex community, and how she eventually came to terms with that reality. We also dive into the trickiness around overcompensating with our children who have disabilities and what it feels like when the people around us seem to be over our children’s recurrent medical issues.

If you’ve ever felt like you’re still finding your place in our community, this is one episode you can’t miss!

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 easier to digest), the season’s theme, and snippets of the first four episodes. 

Plus, a reminder that the discussion groups are here to stay! You all seem to love them so much, and we’re so excited to be able to offer a space for you to meet and form relationships with over parents of disabled and medically complex kiddos. Meetings will be held every other Tuesday, with two times to choose from, with one group meeting at 8pm CST and one at 8pm PST.  

I’m so excited about this new season. Can’t wait to dive in with you! 

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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 that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.

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 and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group.

I also acknowledge that the sadness or pain we have over any of these disabilities or medical issues always stems from the love we have for our children.

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 possible parents to all of our children.

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 author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?

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 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.

We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.

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 empathetic person because of Claire and the lethal nature of her diagnosis.

Trigger warning concerning childhood death. 

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 pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?

In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.

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.

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.