Podcast Title: A Place of Yes | A Grief Podcast
Episode Title: Self-Care Sounds Nice, But Who’s Watching My Kid?
Host: Bright Sighted
Release Date: April 24, 2025

Introduction

In the episode titled "Self-Care Sounds Nice, But Who’s Watching My Kid?" hosted by Heather from Bright Sighted, the discussion centers around the challenges of self-care for mothers who are primary caregivers to children with medical needs. The episode features Jessica Patei, founder and executive director of We Are Brave Together, a nonprofit organization dedicated to supporting caregiving mothers.

Guest Introduction and Personal Journey

Heather welcomes Jessica Patei, expressing enthusiasm about her work:

“[...] I can't think of a more important role or job or needed community in our community, in our rare mom, medically fragile, medically challenged group.” (00:23)

Jessica shares her story about her son, Ryan, who has Prader-Willi Syndrome (PWS):

“When Ryan was born, he could not suck. He couldn't move, he didn't cry. We spent a month in the hospital not knowing what was wrong.” (01:18)

She elaborates on the challenges of PWS, highlighting issues like low muscle tone (hypotonia) and hyperphagia (an insatiable appetite):

“Prader-Willi syndrome is a spectrum. Ryan was very, very low tone, so he needed a feeding tube his first year of life.” (03:04)
“[...] by the time he was 13, I was like, okay, we found seven wrappers of like seven protein bars under his bed. Okay, you're there. It's done.” (04:22)

The Importance of Community and Support

Jessica emphasizes the critical role of community support for caregiving mothers:

“We really need to value caregiving as a job and get paid for caregiving. It is all encompassing, and it requires a lot. And it requires a lot of emotional, mental, financial resources.” (00:01)

Discussing the formation of We Are Brave Together, Jessica recounts how her blogging efforts led to the creation of support retreats:

“I have a list of like, I don't know, I think 100 bite-sized self-care suggestions on our website under our resources.” (27:10)

Heather relates her experience with her son Jake and the ongoing grief:

“[...] this is not in our mission statement, you know, we are an organization that provides, you know, technology, adaptive equipment, medical travel, reimbursement, like sort of tangible things. But a sort of sidebar that has come is a little bit like the community that you're talking about.” (23:30)

Balancing Self-Care with Caregiving Responsibilities

The heart of the episode delves into self-care strategies tailored for caregiving mothers. Jessica differentiates between self-care and self-comfort:

“Self comfort is like Netflix some dark chocolate, a glass of wine, you know, getting your nails done. It's great in the moment and it's a relief and a distraction in the moment, but it will not sustain you for the long haul of caregiving.” (27:10)

She offers practical self-care tips:

• Deep Breathing: “I get up, I go sit on the couch in the morning, I put on some peaceful music and I just put on a timer for 10 minutes and I sit there and I breathe.” (27:10)
• Journaling and Inspirational Reading: Encouraging journaling as a tool for mental clarity and emotional processing.
• Nature Engagement: “Sitting outside in the sunshine and you know, feeling the grass with your feet.” (27:10)

Heather shares her personal self-care routine:

“I went upstairs to our third floor. I have a peloton there. I hopped on like a 20 minute peloton, a Lionel Richie ride. I was like, I want this to be like I'm not, you know what I mean? Like I was like, I'm not necessarily in it for like the cardio right now. I'm in it for like clear my mind, focus.” (27:23)

Overcoming Barriers to Self-Care

Jessica addresses the internal and external obstacles caregivers face in prioritizing self-care:

“You think you can never leave your child, that you do it best. It doesn't mean we can't.” (29:51)

Heather echoes the sentiment, highlighting the guilt often associated with taking time for oneself:

“[...] self-care is not selfish to take care of your mental health and you're in it for the long haul.” (28:24)

Siblings and Mental Health

The conversation shifts to the impact of caregiving on siblings. Jessica discusses the mental health struggles of her daughter during the pandemic:

“[...] racism around mental health struggles. [...] it was very scary, it was very severe, and it is its own version of heartbreak.” (17:09)

Heather reflects on her son Ethan's experience growing up without his brother Jake:

“He was like, oh, we're gonna go see Jakey at the cemetery. And these are balloons. Like, we would have these little routines.” (20:23)

Ask Heather Anything: Supporting Grieving Mothers and Nonprofit Leadership

In the "Ask Heather Anything" segment, Jessica poses two questions:

1. Best Support for Mothers Who Have Lost a Child: Heather responds with a heartfelt recommendation:

   “Someone showed up in the couple weeks afterwards [...] someone offering to be with you and walk beside you literally.” (31:31)

2. Sustaining Motivation as a Nonprofit Leader: Heather shares her approach to fundraising post-pandemic:

   “We do an annual birthday campaign. [...] If you believe in that, then this is how you help us.” (32:24)

Conclusion and Call to Action

Heather and Jessica express mutual gratitude for each other's work and contributions to the community. Heather encourages listeners to support and connect with We Are Brave Together:

“We're putting on support groups, virtual and in person across the United States. [...] Connection Circles. We have leaders all over the country.” (23:35)

Heather wraps up the episode by urging listeners to follow the podcast and share it to extend its reach:

“Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend.” (34:08)

Key Takeaways

• Valuing Caregiving: Recognizing caregiving as a vital, remunerated role requiring extensive resources.
• Community Support: Building and engaging with support networks like We Are Brave Together to alleviate feelings of isolation.
• Practical Self-Care: Implementing sustainable self-care practices that go beyond temporary comforts.
• Sibling Awareness: Addressing the unique emotional and psychological needs of siblings in caregiving families.
• Fundraising and Sustainability: Adapting nonprofit strategies to maintain support and momentum over time.

Notable Quotes

• Jessica Patei:
  “We really need to value caregiving as a job and get paid for caregiving. It is all encompassing, and it requires a lot.” (00:01)
  “Just someone offering to be with you and walk beside you literally.” (31:42)

• Heather:
  “It's not selfish to take care of your mental health and you're in it for the long haul.” (28:24)
  “Please share it with a friend. It would make a world of difference.” (34:08)

Resources Mentioned

• We Are Brave Together: [Website URL]
• Becoming Brave Together Book: [Purchase Link]
• Self-Care Suggestions List: Available on We Are Brave Together’s website under resources.

This episode of "A Place of Yes" offers profound insights into the intersection of grief, caregiving, and self-care. Through heartfelt conversations and practical advice, Heather and Jessica illuminate the path for caregiving mothers seeking support and sustainable self-care practices.