144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile

01/18/24 • 30 min

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!

Links:

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!

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!

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!

Links:

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!

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!

Previous Episode

When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY]

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!

Links:

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 109: Isolating to Avoid Illness, Ep 108: Why the Holidays Suck, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Visit Icing Smiles for custom cakes when in the hospital.

Visit the Confetti Foundation for birthday boxes for hospitalized children.

Visit Little Wishes, a foundation that brings special moments to children who are inpatient.

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!

Next Episode

145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present

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.

This episode is so good and so tender. You don’t want to miss it. And a big thank you to MOOG, our sponsor for this episode!

Links:

Visit MOOG’s website to see the many ways they support families like ours!

Listen to Ep 130: Anticipatory Grief.

Listen to Ep 19: The Story of Claire.

Listen to Ep 51: Isolation vs. Connection.

Follow Ashley on Instagram @savingsadierae!

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.