Rarely Normal

We're honored to welcome Shawna to the studio this week to talk about her son Keenan and his journey with Microcephaly Capillary Malformation Syndrome. From seizers to surgeries and seeing specialists in two states, their strength is palpable. Now Shawna is paying it forward by creating counseling and support for bereaved parents with Keenan's Caring Konnections and raising money for epilepsy.

https://www.caringkonnections.com/

https://www.instagram.com/keenans_caring_konnections/

What a pleasure it was this week, to connect with Ashley about her connection to loss. Her ability to apply experiences being a Reiki Master, reading tarot cards, working in hospice, and studying astrology and signs, means she has an incredibly interesting POV on life, dealth, and everything in between.

Check her out at ashleypagehealing.com

November is Pancreatic Cancer Awareness month. It's considered a rare cancer, since about 3% of all new cancer diagnoses are Pancreatic but it's become a significant public health issue because it is the eighth leading cause of cancer death. We welcome Kate McKenna to the studio to shed light on a cancer that's impacted multiple members of her family. She shared her grief journey, experience supporting her family, and how she's taking care of her own health.

We're honored to have Amy Butterworth in the studio this week to talk about her daughter Cindy Sue. It's a emotional ride and we're grateful for Amy's vulnerability and authenticity.

This week we reconnected as co-hosts to celebrate and discuss Lindsay's grief coaching certificate. She's 9 years into her grief journey, after the loss of her son Quinlan to an exceedingly rare disease (BRAT1) and we discuss where we in now, look back at the first year of grief, and discuss how this certificate will support in the future of our journey.

https://lovequinlan.com/

This week, we are honored to mark Breast Cancer Awareness month by connecting with April Goodman. Now 5 years in remission, her journey was fast and furious and she shared her experience with diagnosis, treatment, and juggling a busy family and job. She's a true warrior with wise advice for anyone facing a similar diagnosis.

Breast Cancer Research Foundation: https://give.bcrf.org/

Runway for Recovery: https://runwayforrecovery.org/

The power of positivity and came through in spades this week. We welcomed Tennille this studio this week to connect with her about her son Jett and his rare brain condition Pontocerebellar Hypoplasia (PCH). Her commitment to giving him the best quality of life, paying it forward, and living a life he'd be proud of, we were so inspired by Tennille.

- Learn more about PCH here: https://rarediseases.org/rare-diseases/pontocerebellar-hypoplasia/

- She also wrote a book! Check out 'A Blended Diet How-To For Your Tubie' https://a.co/d/hdhN0Ky

What a special guest and impactful episode - we're thrilled to connect with Emily this week about her daughter Cora. Her story is one that had to be told! From her path to motherhood, to the impossible decisions she had to make, planning a memorial and carrying on Cora's life and legacy in a way that's special to her and her family...to then face impossible decisions with her second child...Emily's light and thoughtfulness is will leave a lasting impression.

Zellweger syndrome is a rare disorder that affects multiple organs and systems. It is caused by mutations in genes responsible for the assembly and function of peroxisomes, small organelles in cells that play a crucial role in breaking down certain fats and toxins.

We couldn't be more grateful for such a powerful conversation with Kristen Carrier. Her daughter August was born congenital diaphragmatic hernia (CDH) - unknown to her and her husband - and passed away shortly after birth. Her ability to pay-it-forward by leading with kindness and vulnerability, left an indelible impression. She had incredible advice for other grieving parents and is raising her two boys to not only remember August, but to openly talk about her and celebrated her.

We welcome Monica to the studio this week who shares not only her story with child loss and infertility but her commitment to women's health by founding Rhea Community. Her mission is to empower women to step into their reproductive power. By creating a safe space for women to share their stories, she's helping normalize conversations around pregnancy loss and infertility.