The Rare Life

Latest Episodes:

158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now Apr 25, 2024

Show notes

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!

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!

157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold Apr 18, 2024

Show notes

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!

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!

156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins Apr 11, 2024

Show notes

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!

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!

155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings Apr 04, 2024

Show notes

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!

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!

154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson Mar 28, 2024

Show notes

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!

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!

153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins Mar 21, 2024

Show notes

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.

And a big thank you to our sponsor SupportNow.orgfor making this episode possible! Check out their website to get the exact support you need from you community!

Links:

Check out SupportNow.org to get the help you need during tough times!

Listen to Ep 94 on how our friends and family can support us.

Listen to Ep 148 on the family & friend’s perspective.

Listen to Ep 101 & Ep 102 to hear Tiffany’s story.

Follow Amanda @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!

152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It Mar 14, 2024

Show notes

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.

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!
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Links:

Visit Hibi’s website to download the app!

Listen to Ep 77: To Those Who Cannot Say You’d Have Them Any Other Way.

Follow Stephanie on Instagram @steph_stanley12!

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!

151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath Mar 07, 2024

Show notes

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.

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!

Listen to Kari’s previous episodes on The Rare Life: Ep 123 on using the term “special needs,” Ep 10 on Sloan’s story, and Ep 11 on embracing your medical tribe.

Follow Kari on Instagram @kariharbath!

Follow Kate on Instagram @klovestone!

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!

150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider Feb 29, 2024

Show notes

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!

Links:

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

Listen to Ep 142: What If My Child Outlives Me?

Listen to Ep 40: Wendy’s Experience.

Listen to Ep 47: Siblings with Katie Taylor.

Listen to Ep 50: Katherine’s Sibling Experience.

Listen to Ep 99: Family Planning.

Check out @ourrealrarelife 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!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser! Feb 27, 2024

Show notes

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/fundraiser.

Thank you so much, friends!

Links:

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

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.

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