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, Jason and Elizabeth have a great discussion with Ray Mirzabegian, husband to Arsinah and father to two girls, 14 year old Emily and 18-month old Ileana. Ray's daughter Emily was diagnosed as an infant with Dravet Syndrome, a rare and debilitating epilepsy marked by brutal seizures resistant to pharmaceuticals. On the podcast, Jason, Elizabeth and Ray discuss Ray's career change, his drive to help Emily and the countless other children like her. It's an amazing story of a man quite literally obsessed, who works tirelessly now, with his brothers, in charge of the California distribution of Charlotte's Web.™ He founded the California Chapter of the Realm of Caring™ Foundation and launched an organic THC products company called Canniatric™, which caters strictly to the medical cannabis pediatric patients suffering from neurological disorders and childhood cancers. Ray spoke about all of the challenges and obstacles that come in the industry, the "cat and mouse" game that it entails and, as always, the stories of the children and families that keep him going.
In today's podcast, Jason and Elizabeth have a lively discussion with Roslyn Rawlins, a single mother of two young women, Ryan (23 years old) and Sydney (19 years old), and an entrepreneur with lifelong experience in healthcare. Elizabeth met Roslyn some years ago online as they both have daughters with epilepsy. The conversation today delved into all the experiences Roslyn had as a single mom and caregiver for a child who had significant medical issues but who is doing fantastic now as a young adult. The podcast therefore has a bit of a different spin. We've talked so much here on Who Lives Like This?! with caregivers of very young children or of children who are now young adults living at home with profound and continued caregiving needs. While Roslyn's years as a caregiver were arduous and even harrowing, we appreciate how important and interesting it is to speak to someone who has "been in the crunch" and is now in a sort of transition period with her daughter off living her life independently.
Lisa Lilienthal is a wife and mother, a writer and publicist, using storytelling to build mission-based brands. She’s used a wheelchair since age 8, and together with her husband Gene, is raising two kids with special needs. In today's podcast, Jason, Elizabeth and Lisa had a wide-ranging discussion about Lisa's unique experience of raising two kids with special needs even as she navigates the world as a disabled person herself.
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." 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.
Jason, Elizabeth and Dr Bonni Goldstein discuss the history of the marijuana plant and its medicinal benefits, as well as the obstacles families of children with complex healthcare needs have faced in access and use of cannabis medicine for their children. Dr. Bonni also speaks as a caregiver to caregivers. In the show she also reveals how the endocannabinoid system of caregivers and those who experience chronic stress can become unbalanced. Bonni Goldstein, MD is the Medical Director of Canna-Centers Wellness and Education, a California-based medical practice devoted to educating patients about the use of cannabis for serious and chronic medical conditions. After years of working in the specialty of Pediatric Emergency medicine, she developed an interest in the science of medical cannabis after witnessing its beneficial effects in an ill friend. Since then she has evaluated thousands of patients for use of medical cannabis. She has a special interest in treating children with intractable epilepsy, autism, and advanced cancers. Dr. Goldstein recently authored the book Cannabis Revealed: How the world’s most misunderstood plant is treating everything from chronic pain to epilepsy. Dr. Goldstein has presented her clinical experiences at both national and international medical conferences. She has appeared on the TV show The Doctors and is featured in a new documentary called “Weed the People” featured at the 2018 South by Southwest festival.
November is National Family Caregivers Month, otherwise known by the fabulous acronym NaFaCaMo. While we at Who Lives Like This?! are thrilled to have a whole month dedicated to celebrating our fabulous selves, we can't help but laugh at the profane possibilities of both pronouncing its acronym and -- well -- the comic liberties of celebrating caregivers in general. Our beloved Sandra Stein, who graced us with her inimitable wit some months ago, is back in today's podcast, reading poetry, regaling us with stories of caregiving and even Mother FaCaing Miracles! Enjoy, and please join our FaceBook group to send us YOUR stories! Disclaimer: Profanity is involved, so please abstain if you are offended by it!
it might be hard to believe, given the subject matter, but today we had a rocking good conversation with Traci Nagy, the founder of Feeding Tube Awareness Foundation. We all agreed that never had we dreamed of such a discussion, but neither had we dreamed that we would be caregivers of children with complex medical needs and connected to one another in such interesting and enduring ways. Traci created the non-profit in 2010 to educate the public and change perceptions of tube feeding. Her son Lucas was only thirteen days old when Traci just knew something was wrong after experiencing the baby's near-constant projectile vomiting. She couldn't convince her first pediatrician that it was more than just the usual baby spit-up, though, so it was actually weeks before the baby was finally seen by a gastroenterologist. When Lucas was two months old, the family heard what to them at the time was very scary news that Lucas would need a feeding tube.
In this week's podcast, we had the pleasure of speaking with Jennifer Siedman and Blyth Taylor Lord about an amazing community called the Courageous Parents Network. The conversation was a deep one and touched on palliative care, bereavement, grief, friendship and sustenance through connection, but it was so profound and inspiring is is hard to convey its power in words. Anyone visiting here should just listen to it ...
In today’s episode, we have the pleasure of speaking to Michelle Wolf. She is a parent, disability advocate, non-profit innovator and social services entrepreneur. We had a wide ranging conversation about special needs trust and special needs bar mitzvahs.
Jason and Elizabeth are thrilled that they've now recorded 10 podcasts with 10 amazing people and have so much in store for Who Lives Like This?! During today's podcast, the two banter about what's been happening in their lives since they last spoke and launched the podcast which, obviously, is mostly stuff related to caregiving. The podcast has been an incredible venture so far, both hosts agree, and they discuss which episodes have resonated in particular for them. Jason has been inspired and moved by several of the guests' talk of self-care, particularly Paige Figi's in Climbing Mountains with Paige Figi. He also had a kind of "come to Jesus" moment hearing about how Jeneva Stone keeps up a steady stream of communication and talk with her non-verbal son Robert in Writing, Identity and DNA. Elizabeth was affected profoundly by the conversation with Josh Fyman about how he and his wife decided to place their daughter in a residential setting in Making a Decision About Who Will Care for Your Child.
In today’s podcast, we spoke with Miriam Feldman. Miriam is an artist, writer and caregiver. We had a wide ranging conversation about having a child with severe mental health illness, the impact on siblings and the honor of caregiving. We hope you enjoy the show ...
In today's podcast, we talk to Jeneva Stone, a writer, caregiver and "sub-amateur" photographer. Jeneva and her husband Roger live in Maryland and have two children, an eighteen year old daughter, Edith and a twenty-one year old son, Robert. Robert has the rarest of rare diseases, so rare that he was undiagnosed for 14 years. Robert's dystonia is globalized and progressive; he is, essentially "locked in." Despite being non-verbal, Robert has much to say and uses sophisticated eye-gaze technology to communicate. He has a wicked sense of humor, and Jeneva and Roger agree that he is "the happiest kid in the world." We had a wide ranging conversation about her family's 14 year odyssey to find a diagnosis for their son, learning the language of non-verbal communication and the tricky interplay between being a writer and a caregiver. We hope you enjoy the show ...
In today’s podcast, we spoke with Ellen Seidman. Ellen is the mom of 3 kids, a magazine editor and the blogger behind the popular blog www.lovethatmax.com: about kids with disabilities who kick butt! We had a wide ranging conversation about the positive impact Facebook has had despite it’s recent bad press, the Starbucks straw controversy and we even found time to come up with a Willie Nelson inspired caregiver song. We hope you enjoy the show ...
Laura Hatcher is a graphic designer, a small business owner, an adjunct professor and the Director of Communications for Little Lobbyists. She is the mother of a sixteen year old daughter, Olivia, and a twelve year old son, Simon. During a routine ultrasound in the latter part of her pregnancy with Simon, she and her husband Brian learned that the baby had hydrocephaly. When Simon was born they also discovered that he had had a stroke in utero whose effects would cascade into multiple problems, including cerebral palsy and epilepsy. Simon has cognitive and physical disabilities but a phenomenal sense of humor. Laura says, "Simon has the best laugh you've ever heard." He is currently obsessed with Sesame Street and wants to be a chef when he grows up. In today's podcast, Laura, Jason and Elizabeth discuss the intricacies of genetic testing, the work of The NIH Undiagnosed Diseases Program and how they each grapple with the mysteries of their children's diagnosed and undiagnosed problems. When Simon's motor abilities began to decline, they discovered optic nerve atrophy and neurological hearing loss. That led to genetic testing and the discovery that Simon had a unique genetic mutation that was the cause of all of his issues and possibly even his stroke.
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.