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.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!

Read the original “What We Wish We Could Go Back and Tell Ourselves” blog post.

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

Links:

Follow Alyssa on Instagram @caffeinated_caregivers!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

Links:

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Listen to Brianna’s story in Ep 105 and Ep 106.

Listen to Ep 99 on Family Planning.

Follow Brianna on Instagram @brianna.alcox!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

Links:

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow Ashley on Instagram @ashleypaigesmith!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
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.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you’ve been trying and struggling to find a balance that works for your family, this is an episode you can’t miss.

Links:

Get the book “Fair Play” by Eve Rodsky.

Listen to Ep 81 with Amanda on health anxiety.

Follow Amanda on Instagram @amanda.griffith.atkins!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

Links:

Get a copy of “The Power of Now” by Eckhart Tolle.

Get a copy of “Demystifying disability” by Emily Ladau.

Get a copy of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman.

Listen to Ep 97: Melissa’s Story.

Listen to Ep 77: To those who cannot say I wouldn’t have them any other way.

Visit Serena’s website, Play Spark.

Follow Serena on Instagram @play_spark!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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.

This is a gem of an episode, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.

Links:

Visit MOOG’s website to learn about all the resources they’ve created to support your tube-fed child (and you!)

Listen to Ep 151: Befriending Other Disability Parents.

Listen to Ep 95: Parable of the Pain Scale.

Listen to Jillian’s podcast Confessions of a Rare Disease Mama.

Visit Jillian’s website to raise funds to cure her children’s rare disease ASMD (a.k.a. Niemann Pick Disease Type A/B).

Follow Jillian on Instagram @confessionsofararediseasemama!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

And a big thank you to our sponsor Hibi for making this episode possible! Hibi is an app that helps you organize, manage, and share your child’s medical information. Check them out here!

Links:

Visit Hibi’s website to download the app!

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Find a therapist who understands your life as the parent of a disabled child via Amanda’s therapist directory!

Follow Amanda on Instagram @amanda.griffith.atkins!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

If you’d like to reach out to any of the women who contributed to this podcast, you can find them here:

Abigail @gail.putmannn (its hard, there will be tears and a lot of fear but its so worth it. ace needs his dad)

Alex @_alexishome (confide in someone you can trust and do whatever you can to be able to say you tried it all no regret)

Susan @susiev76 (not in episode but welcomes messages)

Amber @ambysaslytherin (not in episode but welcomes messages)

@Johanna_holtz (cheating for 5 years, healing in heartbroken kind of way)

Sandra @_sandraviramontes_ (during covid totally stopped seeing him and now is super hands off, sometimes it works for parents to go half and half on expenses)

Mckenzie @Kenzie.and.jett (wasn’t much fight for our son. NICU for 350 days and brought him home)

Barby @Barslol88 (heaviness in my life, imagine if there were no children. would you still be there?)

Maddison ward @maddisonjward (last one, mic drop that I said I was supposed to read first, you may feel cemented together but its really just Velcro)

Andie @We.are.takingcare (let go of control and discuss everything and get it in writing)

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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!

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!

Follow Aneesa and Jeremiah on Instagram @jeremiahgracentk2dwarrior!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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.

This is a tender episode you cannot miss, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.

Links:

Grab your copy of Moog’s Caregiver Feeding Pump Guide to keep on hand for nurses, family, or maybe even yourself!

Listen to our episodes on child loss and grief, Ep 130 on anticipatory grief, Ep 134 on Child Loss 101, and Ep 137 on life after child loss.

Follow Rose on Instagram @little.miss.seamstress!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!