The Rare Life Madeline Cheney

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!

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!

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!