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Transitioning from Family to Advocacy and Back Again with Natalie Weaver

July 17, 2018

 

Natalie Weaver is a caregiver, mother and healthcare and patient advocate. Her fight was inspired by her daughter Sophia who wouldn't survive without healthcare. Sophia is nine years old, loves music and cuddling and arts and crafts. She was diagnosed with Rett Syndrome, has an immune deficiency and Type 1 Diabetes as well as an unknown cranio-facial deformity.

 

Natalie is the founder of Sophia’s Voice which aims to help people in the disability community in various ways. She helps to connect people with resources, medical equipment and help with financial burdens. She is also the co-founder of Advocates for Medically Fragile Kids NC. The organization works to make sure policies and bills don't harm disabled and medically complex children. 

 

Listen on iTunes

 

In today's podcast Jason, Elizabeth and Natalie talk about Natalie's transition from family and caregiver to national advocacy. While Natalie had always dreamed of being a mother, she never saw herself as an advocate, but once she started, she says that she felt "exhilarated, like me." She says, "I was meant to help people directly."

 

Advocacy, though, has its costs, and Natalie spoke of her need to pull back when the stress becomes too much. She, Jason and Elizabeth had a lively discussion about the effects on their families, particularly the siblings of their children with special needs. 

 

Natalie has recently taken her version of a break, which basically means not working more than twelve hours a day. She travels regularly to Washington to advocate for kids with medical needs and continues her work with Sophia's Voice. She advocates nationally as well as with her North Carolina affiliation, motivated now by the Trump Administration's threat to overturn the ACA and reduce Medicaid funds. Even so, she has been motivated of late, particularly through a book that she recommends in the lightning round, to rest and sit with all of her feelings -- anger, sadness, joy -- and accept them. "My anxiety has dramatically decreased," she says and highly recommends the book.

 

 

 

 

Lightning Round

 

 

Purchase < $100:

 

Hammock Chair - Sophia loves to swing, and I use it for meditation. It makes me so happy!

 

 

Favorite Book:

 

Living Like You Mean It by Ronald J. Frederick

 

 

Most Inspiring Person:

 

My daughter Sophia. When she gets over her daily challenges and her pain, she is filled with joy. She has made me who I am.

 

 

 

 

 

 

 

 

 

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