The Rare Life

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people.
This season, we’ll be talking about things like anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a “Debbie Downer” when you’re honest about the realities of this life. As always, we’ll also have story episodes woven throughout the season, including a long-overdue story episode with Amanda Griffith-Atkins.
We’re also sharing some behind-the-scenes updates in this episode, including how Madeline and Alyssa are splitting hosting and production this season, our first in-person board retreat in Maine, and a little of what we’ve been up to over the summer.
Finally, we’re wrapping up this season opener with clips from the first few episodes. Don’t miss it!
Links:
Access the NICU Survival Guide here or at https://therarelife.org/nicuguide.
Listen to Ep 81: Health Anxiety.
Listen to Ep 85: Should A Child’s Disability be Part of Their Parent’s Identity?  w/ Emily Ladau.
Fill out our contact form to join upcoming discussion groups!
Join The Rare Life newsletter and never miss an update!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it.
In this episode, we’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most.
If you’d like to help, send us a message on Instagram, ontherarelife.org/contact or by emailing us directly at team@therarelife.org.
A huge thank you to our sponsor for this summer season, Real Food Blends!
Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!
Links:
Access the NICU Survival Guide here.
Get involved with distribution efforts by emailing us team@therarelife.org.
Fill out our contact form to join upcoming discussion groups!
Join The Rare Life newsletter and never miss an update!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities.
That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and why she’s ultimately thankful to be able to understand her daughter’s struggles.
A huge thank you to our sponsor for this summer season, Real Food Blends!
Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!
Links:
Fill out our contact form to join upcoming discussion groups!
Join The Rare Life newsletter and never miss an update!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty.
From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered parenting experience. (And why it’s unfortunately still relatable to some parents who technically have partners too.)
A huge thank you to our sponsor for this summer season, Real Food Blends!
Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!
Links:
Fill out our contact form to join upcoming discussion groups!
Join The Rare Life newsletter and never miss an update!
Listen to Ep 156: Should I Get a Divorce?
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it.
From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for.
A huge thank you to our sponsor for this summer season, Real Food Blends!
Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!
Links:
Fillout our contact form to join upcoming discussion groups!
Join The Rare Life newsletter and never miss an update!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.