Who Lives Like This?!
Summary: Join us on our podcast journey to learn from conversations with OUR kinds of celebrities - caregivers living this life honestly and making an impact for our children and others. We’ll also be talking to the other experts, those who help us and fight for us in education and the medical field, for disability rights and so on.
In today's podcast, Sandra Stein joins Elizabeth and Jason to discuss how having a sense is necessary for not just dealing with the day-to-day challenges of caregiving but also personal survival. Even though they have never met in person, Elizabeth and Sandra have a long history of amusing one another on even the hardest of days with telephone calls and colorful texts. On the show we talk with Sandra about using humor as a secret caregiver weapon, finding joy in the little moments and the magic of velcro cleaners. Sandra Joy Stein lives with her husband Matt and son Ravi in New York. Ravi spent the first two years of his life as a typical baby and toddler, but when he was just over two years old, he woke up one morning in a seizure and ended up in a hospital for the next fifteen months. Diagnosed with an autoimmune encephalitis, Ravi's rare disease caused catastrophic neurologic difficulties. He is now a lively nine years old with an indomitable spirit and a smile that lights up everyone around him.
In today's podcast, Josh Fyman tells the story of how their family decided to move Penny to a residential setting after a period of intense medical issues that nearly cost her her life. "The situation deteriorated slowly," he says, "and then all at once." Josh was open about how that decision has impacted them and, most importantly, Penny. He discusses the shock of how it happened, the guilt he's felt, others' judgements, how his team of family and advisors helped them to make that decision and the immediate aftermath. It's a sensitive subject for all caregivers of severely disabled children and young adults, and Josh was honest and incredibly informative in how it's affected him as a father. He is generous with his advice for other parents facing similar circumstances. Josh lives with his wife Avigael and young son Morgan on Long Island. His seven year old daughter Penny has lived for the past 3 1/2 years at St. Mary's Hospital for Children. Penny was diagnosed with Aicardi Syndrome, a very rare seizure disorder. Although the range of severity is large, Penny's disabilities are the most severe, and in addition to seizures she is completely dependent on caregivers for all life activities.
In today’s podcast, we talk to @Natalie Weaver about the transition from a private family life to advocate for our child on the national stage. Natalie’s advocacy is inspired by her daughter Sophia who wouldn't survive without healthcare. She is the founder of Sophia’s Voice which aims to help people in the disability community in various ways. She is also the co-founder of Advocates for Medically Fragile Kids NC and a founder’s council member for United States of Care. 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". We had a wide ranging conversation about caregiving, the transition to advocating nationally and the not so fun side of dealing with internet trolls. We hope you enjoy the conversation as much as we did.
You might already have heard of Paige Figi -- or at least her daughter Charlotte of the eponymous "Charlotte's Web," a type of therapeutic hemp oil with low THC and high CBD (CBD, or Cannabidiol, is a known anticonvulsant, reducing epileptic symptoms without the psychotropic effect). Raising a daughter with Dravet syndrome, a serious form of epilepsy, Paige -- a mother of three in Colorado -- was desperate to find a treatment that would help her then 5-year old live a better life. Through that journey of finding a successful therapy for her daughter's seizures, Paige convened a chorus of voices of more than 15,000 families. She and her daughter have been featured in The New York Times, The Wall Street Journal, on a CNN special hosted by Dr. Sanjay Gupta, and most recently on Dateline NBC. Paige is also the Executive Director of Coalition for Access Now, a non-profit organization led by families committed to educating the public and lawmakers on the health benefits associated with natural therapies derived from cannabis for chronic health conditions. On the podcast, we talk to Paige not only about what's made her a famous caregiver but what's happened after all the publicity, all the advocacy and entrepreneurship. An avowed adventurer -- mountain climbing and dirt biking are her passions -- Paige discussed candidly her intent to get back to her dreams. In fact, we recorded the podcast while Paige was training and preparing for a climb of Denali, the highest peak in North America.
Ted Lyde is a comedian and the father of a special needs son and a "near-genius" daughter. His son Jackson is fifteen years old and his daughter Grace is seventeen. Jackson has muscular ataxia and is non-verbal, but Ted says he's still very loud and celebratory, even at 5 am. He's been married to his wife Jaime for many years. In today's podcast, we discussed everything from what it means to be a father of a special needs son, how anger and grieving affect mothers and fathers differently, and what discipline is appropriate for special needs kids to what it means to be a man and a provider. We also talked and laughed a lot about sleep -- or the lack thereof. Ted claimed to have not had a profound night's sleep for sixteen years, at least since he became a father.
Our guest today is Elena Hung. She is the President and Co-Founder of Little Lobbyists, a parent-led organization that advocates for children with complex medical needs. Her daughter Xiomara (whose name means "ready for battle") was born with a number of medical issues. Elena, Xiomara, and families like them have been visiting Capitol Hill and speaking with lawmakers and their staffers, talking about what is possible with access to quality, affordable health care, and what is at stake without it. Elena: "We are story tellers. We are truth tellers. We are sharing the humanity of children with complex medical needs."
Elizabeth Aquino and Jason Lehmbeck are the creators and hosts of the WhoTF Lives Like This?! podcast and blog. Another caregiver of a special needs child who lived across the country connected them with one another, and they found out that they not only both live in Los Angeles but within miles of one another! In today's podcast, Jason and Elizabeth interview one another in much the way they will be interviewing the other caregivers, touching on their individual passions and motivations, their children and, of course, their lives as caregivers. The conversation begins.
Who Live's Like this Podcast: Join us on our podcast journey to learn from conversations with OUR kinds of celebrities - caregivers living this life honestly and making an impact for our children and others. We’ll also be talking to the other experts, those who help us and fight for us in education and the medical field, for disability rights and so on.