Today we're doing something a little different at Who Lives Like This?!, and in so doing, building our community a little bit more. We're cross-podcasting -- is that an expression? -- with podcaster Mary Susan McConnell. The Mama Bear podcast is "a place for women raising children with special needs to get together and chat about life." Mary Susan's guests range from highly visible in social media-world super-moms to single mom entrepreneurs, and topics discussed include self-care, estate planning, organizing and all the myriad emotions that go into raising a child with special needs. It's real, authentic and honest -- and just like Who Lives Like This?!, a set of headphones might come in order if you're hanging out with your kids!
In today's podcast, Jason, Elizabeth and Mary Susan talk primarily about caregiver burn-out and planning for the future, but they agreed that the connections made "in this life we live" have been profound and completely life-altering. Mary Susan says that a common theme for her guests is the lack of time they have to do anything related to self-care. She believes in and is passionate about encouraging caregivers to be literally pro-active in self care in order to avoid the burnout that a life with chronic stress commonly brings. Jason and Elizabeth agreed, and the three shared the ways that stress and burnout have affected them and how they have sought to remedy this in their individual lives. They discussed a recent New York Times article about the stress gap between men and women in general and how being the caregiver to a child with complex medical needs heightens that gap.
Planning for the future is another common theme for Mary Susan's MamaBear podcast, as it is for Jason and Elizabeth in their interviews with caregivers on Who Lives Like This?! They discuss their various experiences, including Elizabeth's pep talk from the vantage point of experience (her daughter is now nearly 24 years old). Jason talks about how difficult it's been and how he struggles with a sense of urgency as he contemplates his son's limited verbal ability and independence. Mary Susan shares some of the advice she's gotten from attorneys and gives practical tips on how dealing with estate planning can actually help alleviate stress. Each agreed that thinking about and planning for their children's future is beyond difficult, that it's near existential and that, after doing the obvious planning, one has to surrender worry a bit and live in the present.
In another life, Mary Susan was a middle school teacher. Now she is finishing up her education degree while staying at home caring for her daughter Abi who has multiple special healthcare needs, including cerebral palsy and seizures. Mary Susan and her husband Sean, a singer/songwriter, live in the country outside of Nashville, Tennessee in a home filled with music. She has a pottery studio in the barn, 10 chickens, a dog and a garden that has "failed to produce anything more than some herbs and tomatoes." Mary Susan says that sitting outside on the porch and watching the sun go down is currently her favorite self-care activity.
You can listen to Mary Susan's MamaBear podcast here.
Purchase < $100
A massage or reflexology
A Girl Named Zippy by Haven Kimmell -- I've read it so many times, and it makes me laugh out loud every time.
Every other caregiver I have found through Facebook, other social media, books, etc. Everyone's story is so different, but I value them so much.