The Rare Life

Latest Episodes:

143: Season 8 Finale | International Listeners, Frantic Behind-the-Scenes Work, and Surprising Popular Episodes w/ Alyssa Nutile Nov 16, 2023

Show notes

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!

Links:

Join the TRL Sticker Club to support the podcast for the coming season!

Follow Alyssa on Instagram @alyssanewt!

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!

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!

142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-Atkins Nov 09, 2023

Show notes

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.

Links:

Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.

Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Use my mejo to have a record of all of our child’s medical records and documents in one place.

Use this free Medical Summary Sheet to give other caregivers a quick overview of your child’s health updates.

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!

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!

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!

141: How Our Faith + Spirituality Can Be Impacted by Our Experiences with Our Medically Complex Children (+ Visa Versa) w/ Ali, Bethany, Melissa, and Rachel Nov 02, 2023

Show notes

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!

Links:

Join The TRL Sticker Club!

Watch our brand-new trailer!

Listen to Episode 83 Part 1 & Episode 83 Part 2 to hear An Evolution in Faith with Kimberly Arnold.

Follow Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis on Instagram!

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!

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!

140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis Oct 26, 2023

Show notes

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!

Finally, a big thanks to our sponsor for this episode, Functional Formularies!

Links:

Visit the Functional Formularies website for more tube-fed formula options!

Listen to Ep 19: The Story of Claire for another perspective on life-limiting diagnoses.

Listen to Ep 125: Traveling with Disabled Kids w/Alyssa Nutile.

Listen to Alyssa’s podcast Caffeinated Caregivers.

Follow Alyssa on Instagram @caffeinated_caregivers!

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!

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!

139: In-Home Nursing | The Good, the Bad, + the Ugly w/ Caitlin Castro, Nicole Dennis + Brooke Teremi Oct 19, 2023

Show notes

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.

Links:

If you’re just getting started with in-home nursing, read our blog post: 13 Rights You Have As a Parent When You Have In-Home Nursing.

See if and how you qualify for in-home nursing in your state by checking the state-by-state guide at Kid’s Waivers.

Follow Brooke on Instagram @brooketeremi!

Follow Nicole on Instagram @nicolebdennis!

Follow Caitlin on Instagram @seedycastro!

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!

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!

138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD Oct 12, 2023

Show notes

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

Links:

Check out our affiliate BetterHelp for online licensed therapy.

See Amanda Griffith Atkins Directory of therapists who have experience working with parents like us!

Check out this list of Cognitive Processing Therapy (CPT) providers.

Here's a directory of EMDR therapists!

Check out the Postpartum Support International "Mental Health Support for Special Needs and Medically Fragile Parenting" group.

Check out Give An Hour’s Rare Caregiver Peer support groups.

You can also find therapists on PsychologyToday.com.

Learn more about ACT therapy.

Listen to Ep 25: EMDR therapy.

Read Special by Melanie Dimmitt for her experience with therapy.

Follow Liz on Instagram @parent.caregiver.therapy!—her Instagram account

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!

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!

137: Life After Child Loss | What is Grief, How Does It Show Up, and What Can We Do About It? w/ Cole Imperi + Leah Deason Oct 05, 2023

Show notes

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.

Links:

Listen to our other episodes on child loss, 134: Child Loss 101 and 130: Anticipatory Grief.

Visit Cole’s website to read her blog and stay up-to-date with her book launches!

Follow Cole on Instagram @imperi.

Follow Leah on Instagram @becauseofozzie.

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!

136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger Sep 28, 2023

Show notes

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.

A big thanks to the sponsor for this episode, Functional Formularies!

Links:

Visit today’s sponsor Functional Formularies your child’s special dietary needs!

Grab a copy of Bethany’s book “William Tries Again.”

Follow Bethany on Instagram @joyfulblondie

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

Fill out our contact form to get a reminder about upcoming discussion eetings 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!

135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSW Sep 21, 2023

Show notes

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.

Links:

Listen to all of my previous episodes with Amanda: Ep 132: When Self-Care Gives Us the Swears, Ep 131: Chronic Stress, Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.

Follow Amanda Griffith-Atkins on Instagram amanda.griffith.atkins.

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!

134: Child Loss 101 | What to Expect, Decisions You Can (and should) Make Now + How to Make The End Of Your Child’s Life As Beautiful As They Are Sep 14, 2023

Show notes

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.

Links:

Listen to Ep 130 on Anticipatory Grief.

Visit the website for Now I Lay Me Down to Sleep (end of life photography).

Look at @adventuresofamelieandbros stories for information on her diamond ring made from ashes of daughter.

Check out Leah’s hospice memory making Amazon list.

Follow Leah on Instagram @becauseofozzie!

Follow Tiffany on Instagram @lifewithkourageouskarter!

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.