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 we spoke with Jessica Patay a mother, wife, and advocate for mothers of special needs children. She is also a coffee and book addict, who has no business buying any more books this century. Or shoes. Married to her husband Chris for 22 years, she uses her psychology degree to artfully and carefully lead her lovely brood of 3 teenagers, Luke (18), Ryan (15), and Kate (13). Ryan was diagnosed at birth with Prader Willi Syndrome, a rare genetic disorder marked by hyperphagia, low muscle tone, obsessiveness and anxiety. Ryan is her "most grateful child," Jessica says, a sensitive boy who suffers from extreme anxiety but whose heart is huge. In today's podcast, Jason, Jessica and I spoke about the intuitive powers of our children, their empathy for others and sensitivities that belie their diagnoses of cognitive impairment. We also spoke about sibling issues, and Jessica shared some tips and great ideas on how their family has managed to juggle alone time with each of their typical children. Our discussion includes Jessica's current passion, the organization she has created called We Are Brave Together. Jessica describes the group as "a beautiful collision" of her life as a special needs mother and a passionate lover of female friendships and closeness.
In today’s episode, we covered a broad range of topics with Hillary Smiley including practicing gratitude and finding the gifts in the everyday moments of this life. "Anything, if offered to God, can and will become your gateway to joy." -Elisabeth Elliot That's a quote that Hillary Smiley uses as a touchstone. She is a photographer based in Los Angeles and has been married for 15 years. They have four children, the oldest is thirteen and the youngest, aged four. Their third child, ten-year old Luke, was born with chromosomal and brain abnormalities and the rarest form of a rare syndrome. Despite the challenges that come with being a special needs parent, Hillary regularly looks for and counts the gifts that God has given her, especially in the often missed, everyday moments of life.
In today’s episode, we had the pleasure of speaking with Amialya (Mia) Durairaj a writer, communications consultant, advocate and caregiver of two children with special needs. We covered a broad range of topics about work life balance as a special needs parent and the special skills we develop along the caregiver journey. Mia is a mom of identical twin toddlers, both of whom have special needs. The girls, now aged two, were born three months early and had respiratory and cardiac issues related to prematurity. Both girls have had numerous surgeries and spent many months in and out of the hospital, but Mia reports that "things continue to look up, and they're both doing great now." Mia, her husband and the girls live in San Diego, California. When she isn't wrangling her kids, Mia is a health writer and communications consultant at Little Octopus, LLC, and her work has been published in The Washington Post, a recent World Health Organization report, Hand to Hold, The Mighty and more. She's also the co-creator of Mindful Return's Balancing Career with a Special Needs Baby program which has been featured in numerous parenting and family magazines and periodicals. As if that isn't enough to keep her busy, she's the founder and co-chair of the Cardiac Family Advisory Council at Rady Children's Hospital in San Diego, California.
Finally a podcast with siblings! Given the repeated request for a podcast with siblings, we've finally come through and are thrilled to introduce you to two stellar young men: Henry and Toby. Henry Beglinger is a native Angeleno, the middle child and younger brother to Sophie, Elizabeth's daughter who has a refractory seizure disorder and severe developmental disabilities. Toby Okoye also attends Gonzaga where fate threw Henry and him together as friends and now roommates. Toby lives with his parents and siblings in Puyallup, a small city outside of Seattle. He is the oldest of four children by six years; his younger sister and two brothers are triplets who were born prematurely and who each have autism. As our discussion with Henry and Toby progressed, we hung back with our mouths open, stunned at the beauty and wisdom that came out of these young men. We talked about the guys' early experiences with their siblings, when they figured out that something was "different" about their siblings, and how they coped with stressful situations over the years.
Jason and I were so excited to talk this week with A. Laura Brody, an artist here in Los Angeles with an exquisite sensibility. She describes herself as "a sculptor of the human body and its vehicles." Her sculptures are conceived with "a commitment to social justice and are inspired by art history and the spirit of scientific discovery." Her career as a professional costumer coupled with a passion for reuse gave her the skills needed to turn wheelchairs, walkers and mobility scooters into sculptural works of art. Laura believes that disability is a natural human condition and that instead of "fixing," hiding or denying it, we should make it "thrive."
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.