Finding it hard to imagine your child transforming their fear of medical appointments into proud moments of bravery? This episode of Empowered by Hope illuminates that journey through the inspiring story of Charlotte, Emily’s daughter, who recently earned a bravery award for her courage. Navigating the complexities of medical procedures with your child is never easy, but preparation and self-care can make a world of difference. Ashlyn opens up about her own experiences with Emery, sharing pivotal moments that taught her the importance of being a calming presence. From the significance of clear communication with healthcare providers to the simple yet profound act of staying in the room during traumatic procedures, discover strategies that can help alleviate both your child's and your own anxiety during these challenging times.Empowering children in medical settings is crucial, and proactive steps such as creating a "poke plan" can turn anxiety into confidence. Learn how involving child life specialists and practicing at home can transform a child’s experience, as illustrated by Ashlyn who made ultrasounds enjoyable for Emery, by incorporating her love for animals and superheroes. Celebrate the small victories and the strength that comes from supportive connections, and remember, you are not alone on this journey. Subscribe for more insights and share your own stories to help sustain this empowering community.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Receiving a life-altering diagnosis for your child reshapes everything. In this episode, Emily shares the emotional journey of discovering Charlotte’s rare condition—Hardikar Syndrome, a diagnosis with only nine documented cases worldwide at the time. We reflect on those heart-wrenching days and how hope and support helped Emily & Dan navigate the unknown. A key figure in our story is Dr. Alanna Strong, whose expertise and care have been invaluable.We explore how using #hardikar on social media led us to a global network of 21 families affected by Hardikar Syndrome. What began as a few online connections has grown into a strong community. Together, we’ve deepened our understanding of the syndrome and doubled the patient population for research initiatives led by Dr. Strong. This episode highlights the power of genetic research and community-driven support.Navigating a rare medical condition can be isolating, but it also brings moments of hope. We discuss how a diagnosis provides clarity, connection, and access to essential resources. No family should face this journey alone, and we invite listeners to share their stories and connect with us. Together, we can find strength in unity and spread a message of hope and resilience for families facing rare medical challenges.Hardikar Resources:1. "Charlotte has a Diagnosis!"2.  "Novel Insights into the Phenotypic Spectrum and Pathogenesis of Hardikar Syndrome" 3. Contact Dr. Alanna Strong 4. Private Hardikar Syndrome Support Group - click here to join this group if you are the parent of a child with Hardikar or you have Hardikar5. Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine discovering that the best medical treatment for your child's rare condition is halfway across the globe. Join us, Ashlyn and Emily, as we recount the incredible journey of Ashlyn's daughter, Emery, who was born with bladder exstrophy. Ashlyn's advocacy journey for Emery led them to a life-changing procedure at Great Ormond Street Hospital in the UK, making Emery the first American to undergo the 20+ year old surgery. This episode of Empowered by Hope underscores the importance of global medical options and the pivotal role of empowered parenting and relentless advocacy in finding the best care for our children.We detail our efforts to bring the revolutionary Kelly Continence procedure to the US, highlighting Charlotte's Hope collaboration with top surgeons Dr. Imran Mushtaq from London, Dr. Marc LeClair from France, and Dr. PJ Lopez at Rainbow Babies and Children's Hospital in Cleveland, Ohio. Learn about the collective quest to make this life-changing surgery accessible to more families, sparing them the daunting task of traveling abroad. We share highlights from a recent webinar where parents engaged with these world-leading experts, showcasing the power of advocacy in expanding medical horizons.Navigating the journey of advocating for your child can be overwhelming, but you're not alone. We provide practical advice on trusting your instincts, seeking multiple opinions, and staying informed about new treatments. Our episode emphasizes the strength found in unity and the importance of connecting with others for support. We invite you to subscribe, share your personal journeys, and remember that even on the toughest days, you are doing an exceptional job. Share your story with us at contact@charlotteshopefoundation.org and join our community of empowered parents.Additional Episode Resources:Link to Bladder Exstrophy-Kelly Continence Procedure Webinar: https://www.uhhospitals.org/health-talks/articles/2024/09/care-for-children-with-bladder-exstrophyWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine facing the overwhelming task of preparing your child with complex medical needs for school. Emily knows this journey all too well with her daughter Charlotte, and in this heartfelt episode of Empowered by Hope, she shares her invaluable experiences. From dealing with feeding tubes and medications to navigating physical limitations, Emily and Ashlyn provide practical strategies and compassionate insights to help you become a confident advocate for your child within the school system. Learn how to tailor educational experiences that allow your child to grow, develop, and genuinely enjoy their learning journey despite the challenges they face.We also discuss the critical role of parental advocacy, offering three essential tips that can make a world of difference. Find out how to secure an intervention specialist, leverage the power of parent support groups, and trust your instincts to ensure your child's needs are met effectively. Emily's firsthand advice underscores the importance of speaking up and recognizing that each child's school journey is unique—it's perfectly okay for their path to look different from others. Join us for this supportive and empowering conversation, and don't forget to subscribe, share your stories, and spread the word to those who might benefit from this invaluable guidance.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine the fear gripping you as you hear your child’s complex medical diagnosis for the first time. It’s a fear Ashlyn Thompson and Emily Whiting deeply understand and tackle head-on in this episode of Empowered by Hope. Join us as we explore ways to transform that paralyzing fear into a wellspring of courage and hope. From acknowledging the terror of the unknown to verbalizing your fears and reducing their grip, we share strategies to help parents advocate fiercely for their children while navigating their unique journeys with resilience.We delve into the intersection of fear and faith, underlining the importance of accepting fear as a part of life and taking actionable steps to manage it. Highlighting the value of mental health support, whether through therapy or medication, we emphasize that seeking help is a sign of strength, not weakness. Ashlyn’s personal story about Emory’s pre-op preparation shines a light on finding courage amid overwhelming dread. Remember, you are not alone in this journey—our community is here to offer comfort, support, and hope every step of the way. Subscribe, share your stories, and connect with us to find the strength and solidarity you need.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine creating an eight-page care document for your in-laws just to ensure your child's complex medical needs are met. That's the reality many parents face, and it's exactly the kind of challenge we're tackling in this episode of Empowered by Hope. Emily, our go-to for all things organization, shares her tried-and-true methods for turning chaos into clarity. We explore the delicate balancing act required to manage medical appointments, household chores, and personal relationships, all while keeping your sanity intact.When everything feels like it's on fire, how do you decide what to handle first? We discuss the art of prioritizing urgent tasks, emphasizing the importance of slowing down to be more effective. Emily and I delve into the emotional toll of caregiving and why giving yourself grace can be a lifesaver. From differentiating between emergent and non-emergent tasks to accepting and asking for help, we share personal anecdotes and practical strategies to help you keep your head above water.Finally, we discuss the tools that help us stay organized even with ADHD. A simple notepad from Ashlyn's mom, listing the top three daily priorities, has been a game-changer. We talk about setting realistic goals, managing external pressures, and the pitfalls of procrastination. By the end of the episode, you'll feel empowered and reminded that you're not alone on this journey. Join our community, share your experiences, and together, let's find strength and support in one another.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Discover the transformative power of living in the moment as we navigate the intricate world of parenting children with complex medical needs. You'll hear Ashlyn's heartfelt account of her daughter Emery's remarkable journey through a tough post-surgery recovery in England. Emery's amazing ability to bounce back from pain to joy teaches us valuable lessons about mindfulness, and we'll discuss how children naturally embrace this state of being and how, unfortunately, adults can often disrupt this instinct.We'll take you on a family beach trip where medical challenges, like Charlotte's recent surgery and high risk for UTIs, initially threatened to overshadow the fun. Learn how meticulous planning, effective communication, and creating a supportive team environment can turn potentially stressful situations into memorable and joyful experiences. This discussion is packed with practical advice for balancing medical concerns and family enjoyment, helping you to acknowledge fears while staying present in the moment.Finally, we'll share actionable strategies for integrating mindfulness into your daily routine to enhance well-being. From starting your day without reaching for your phone to short YouTube meditations, deep breathing exercises, and grounding techniques, these tips are designed to keep you centered despite life's chaos. We also delve into personal self-care practices, like favorite meditation techniques and sensory experiences, to foster calm and joy. Join our community of support and share your stories with us at contact@charlotteshopefoundation.org.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Discover the transformative power of understanding trauma with the expertly insightful Sarah Curry, communication manager for Cincinnati's Ronald McDonald House and a certified trauma and resilience specialist. Sarah guides us through the complexities of trauma, particularly as it relates to caregiving for children with complex medical needs. Through her invaluable expertise, we explore how recognizing and comprehending trauma can shift our approach, allowing us to ask more compassionate questions like "what happened to you?" instead of "what's wrong with you?"We delve into the science behind trauma, examining how it affects the brain and behavior. Sarah breaks down the physiological changes that occur during traumatic experiences and the importance of establishing safety and trust. By understanding these mechanisms, caregivers can better manage their own responses and support those they care for. Practical strategies and personal anecdotes highlight the necessity of trauma-informed care, ensuring that even in high-stress situations, we can foster resilience and a sense of control.Empathy, support, and self-care emerge as crucial themes throughout our conversation. Sarah emphasizes the significance of maintaining boundaries and preventing burnout for caregivers, while also providing tools to help trauma survivors feel understood. Listen as we unravel the concept of the "window of tolerance," and share actionable advice to navigate trauma awareness and recovery. By being trauma-informed, we not only support those in need but also reinforce our own well-being and strength in this shared journey. Subscribe and share your story with us as we continue to support each other.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

How do you navigate the daily challenges of your child's post-surgery recovery when the experts can only provide clinical advice? Join us on Empowered by Hope as Emily and Ashlyn share their heartfelt journeys, illustrating the real-world struggles and triumphs of managing a child's medical condition, side effects and challenging realities after surgery. Regardless of the surgery type, we promise you’ll come away with practical strategies and clarity on who and where to get the help your child needs. You'll hear firsthand how other parents have built strong support circles and found the right professionals to guide them through different aspects of care.Have you ever felt unsure about making critical decisions for your child’s health? We get it. Trusting your inner voice can be daunting, but as caregivers, we know our children best. In this episode, we underscore the power of intuition and being well-informed, helping you to confidently navigate your role as an advocate. We conclude with a powerful reminder of the collective strength and resilience within our community, encouraging you to share your stories and connect with others who understand. Tune in, be inspired, and remember: you are never alone on this journey.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Ever wish you had a quick, powerful resource to tackle your biggest pediatric caregiving challenges? We promise to make every minute count as we unveil our refreshed, streamlined podcast format designed just for you! Join Ashlyn Thompson and Emily Whiting as they return to Empowered by Hope, eager to share how our bite-sized, focused episodes will bring you clear, actionable advice on topics that matter most to caregivers. Whether you're navigating complex medical needs or seeking ways to be heard by healthcare professionals, our concise episodes will provide the support and solutions you need without taking up your precious time.In this episode, we also reflect on our successful gala and look forward to the exciting future of Charlotte's Hope Foundation. We also discuss how we plan to foster more interaction with our listeners, making it easier for you to share your pressing questions and concerns. Our goal is to create a community where caregivers feel seen, heard, and supported every step of the way. Tune in to learn how our new format will offer you the targeted, efficient, and effective support you've been looking for!We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Embark on a journey of hope and celebration with us, as Emily Whiting and Ashlyn Thompson unveil the grandeur of the upcoming Celebration of Hope Gala. This episode of Empowered by Hope is about painting the town with the vibrancy of giving, where every dance step taken and every bid placed at the auction is a stride toward empowering families with children facing complex medical needs. Get ready to don your Derby hats and raise your mint juleps to the cause that binds us in unity and resilience, echoing the stories of those who've found strength in the embrace of our community.It’s not just a gala; it’s a beacon of light for many, akin to the guiding mission of Charlotte's Hope Foundation, explored in detail through our heartfelt conversation. Feel the anticipation build for an evening suffused with the spirit of philanthropy, featuring live music that stirs the soul and heartfelt narratives that remind us why we gather. Whether gracing us with your presence or championing the cause from afar by joining our silent auction, your support carves pathways of hope for countless families. And when the curtain rises on this special night in Wooster, Ohio, remember the power of community and the shared promise that none of us walks this path alone.Get your tickets or donate early if you can't attend: https://go.rallyup.com/celebrationofhope/Campaign/DetailsWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

"Feeling lost in the maze of funding options for your child's needs? My proven system can help. I'll guide you through a clear, step-by-step process to identify grants and foundations that match your child's needs. Stop wasting time on dead-end searches. Gain the confidence to secure the financial support your child deserves, and free up your time to focus on what matters most."  -Abby Zacharitz, Empowered by Hope Podcast Guest Abby Zacharitz, joins us to share her heart-wrenching yet inspiring journey of hope and advocacy in today's episode of Empowered by Hope. From the depths of a near-drowning incident with her toddler son, Advocacy Abby emerged as a force of support for all parents facing the complexities of raising children with medical needs. She offers a system to help families find financial backing and emotional solace without the exhaustive searches that steal precious time.Hope can often be the strongest medicine, a theme powerfully woven through our conversation as we traverse the paths of families relentlessly pursuing treatments like hyperbaric oxygen and stem cells for their children. These aren't just treatments; they're lifelines, often unreachable through the net of traditional insurance. We spotlight the shared strength and ingenious resourcefulness of Abby's community, parents uniting under the banner of Relentless Hope to share breakthroughs across diverse diagnoses. Finally, Abby offers a beacon of guidance for parents navigating the treacherous waters of healthcare costs, and caregiving support. Her comprehensive grant coaching course delivers the tools and knowledge to secure crucial support, moving beyond the noise to address practical needs like insurance nuances and finding custom grants. It's about teaching families to fish in the vast sea of resources, empowering them with independence and clarity. We wrap up by reinforcing our commitment to the mission of Charlotte's Hope Foundation, inviting our listeners to engage, subscribe, and draw strength from stories that cement our belief in unity and the power of a community that faces challenges together, for our children.Be sure to get on the waitlist for her exciting live digital course that will be packed with tools, guides, and realistic implementation steps to help your family break through limitations that stand in the way of getting your child what they need:Advocacy AbbyUnlocking Financial Resources: Step-by-StepJoin the waitlist today to be the first notified when it's available:https://www.advocacyabby.com/#text-d07eb8b2GetWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine being 21 years old, newly married, in the middle of dental school and excited to start a family, then finding yourself in the NICU with your newborn for four months, completely unexpected. When life presented Leah Crum with the surprise of raising a daughter with extremely rare medical needs, she embraced it with resilience and hope. On our podcast, Leah shares her uplifting journey, revealing how she transformed her worldview to celebrate her daughter Camilla's unique milestones, rather than conform to societal expectations. Her story isn't just one of parenting through adversity but a lesson in treating oneself with the same kindness we would offer the little ones we fiercely protect.This episode is a tapestry of real emotions, strategies, and coping mechanisms that speak to any parent facing their own set of challenges. Leah's narrative takes us from the disarming moments of Camilla's early medical battles to finding joy in the everyday nuances of family life that redefine 'normal.' Her insights shed light on the power of initiating open conversations and finding strength in community support, proving that isolation can be conquered with a proactive stance and a compassionate heart.As we wrap up our heartfelt discussion, Leah & Ashlyn leave us with valuable takeaways on personal growth, childhood nostalgia, and the creative outlets that help manage anxiety—be it walking the dog or crafting bead bracelets. Her vibrant spirit is a reminder to listen to our needs and find solace in the things that bring us simple pleasures. Join us for this powerful conversation, where we celebrate the courage it takes to face the hard things and do so together, for the sake of the children we love.Please consider leaving a review if this episode resinated with you and sharing it with others so they too can feel supported and encouraged by the incredible courage and enthusiasm for life Leah shares with us. Follow Leah Crum:Instagram: https://www.instagram.com/leahcrum_/Join us at the Celebration of Hope Gala: a Derby Affair on May 4th in Wooster, OH as we gather to celebrate the undeniable impact of hope and band together to carve a better path forward for families who find themselves on the journey of rising a child with medical challenges. Tickets available now—secure your spot today! Space is limited, and we want you to be part of this extraordinary event. Individual tickets and tables are available for purchase.PS - Can't attend but still want to make a difference? You can support the cause in various ways:MWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Kristy Cook, the heart behind Accessible Adventures, dedicated wife and mother of four, joins us to share her family's story, illuminating the joy and beauty found in life's unexpected paths. Embracing each day with a philosophy of "I'm glad I tried it" over "I wish I had," Kristy's narrative is a beacon of positivity for parents who have yet to step outside society's assumptions of life raising a child with special needs. Take a seat at our "campfire conversation", where Kristy recounts adventures that have not only united her family but also provided healing and personal growth. From wheelchair-accessible escapades to the creation of an online community that offers a lifeline of information and support, Accessible Adventures is her family's answer to the scarcity of resources they once faced. With tales of their scenic travels and the impact on their family dynamics, listeners will discover just how transformative new environments and experiences can be for everyone involved.Navigating the emotional currents of quality-of-life decisions, Kristy offers insights into the challenges and triumphs they've faced with their son Robbie's medical treatments. She opens a window into the careful balance between preserving a child's spirit and the efficacy of medical interventions, showing how trusting parental instincts can lead to moments of pure joy. As we wrap up, we're reminded of the importance of supporting each other—just as Kristy and her husband, TJ, have done through their journey. Listen in and be inspired by the strength of a family focused on living a full life, no matter the odds.Accessible Adventures: https://accessibleadventures.net/index.html#/Instagram: https://www.instagram.com/accessible.adventures/?hl=enAccessible Adventures LinkTree: https://linktr.ee/Accessible.adventuresWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Today's episode is a heartwarming and powerful testament to the strength of the human spirit, as we're joined by Kyla Thomson, mother to Bella of TikTok fame from the account Bella Brave. Kyla's moving narrative takes us from the deepest worries a parent can face to a horizon of hope, as she recounts the transformative effect of Bella's medical journey on their family. Amidst the laughter and tears, Kyla's story is one of a mother's fierce love and unwavering advocacy, transforming personal grief into a rallying cry for community and purpose.As we navigate the complexities of parenting a child with serious health conditions, Kyla reveals how she turned feelings of isolation into a beacon of hope for others. The Thomson family's narrative is a profound reflection on the shared experiences that bind us, whether we are laughing in the dark or finding solace in the kindness of strangers online. Kyla's shift from a life focused inward to one of empathy and connection is an inspiring call to action, highlighting the critical need for humor, support systems, and a community that understands the relentless demands of a medical odyssey.Our conversation culminates in a raw exploration of the challenges and triumphs in navigating the healthcare system, the life-saving power of trusting a parent's intuition, and the remarkable journey towards healing and resilience. Kyla's wisdom shines as she shares how therapy, including EMDR, served as a linchpin in her recovery from trauma, and reinforces the vital importance of preparedness for families embarking on similar paths. This episode promises not just insights, but a shared experience of strength, courage, and the unshakeable bond forged in the fires of adversity.If you found this episode helpful, please consider sharing so that those who need to hear Kyla's message have a better chance of receiving it. Everyone knows someone and we never know who is waiting to hear that one message that can heal their pain. Thank you!Kyla Thomson: https://linktr.ee/kylactKyla Thomson: https://linktr.ee/kylactInstagram: @kylact https://www.instagram.com/kylact/TikTok: KylaCT https://www.tiktok.com/search?q=kylact&t=1709190850795Kyla is available to be your next Keynote Speaker: https://bella-brave.com/en-usd/pages/speaking-servicesWe kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

When Sarah Kalis walked into the room with her son, Crew, I saw more than just a mother and her child; I saw a beacon of hope personified. Sarah, a former special education teacher turned medical mama, joins us to share the profound lessons and stories from her life with Crew, who has cerebral palsy. Her candid narration of the transformations she's undergone – from shock and grief to acceptance and advocacy – is a testament to the power of resilience amidst the unpredictable waves of parenting a child with special needs. This episode is dedicated to every parent who finds themselves on a similar journey, as we offer solidarity and comfort in knowing that even in the depths of challenge, there is community and support ready to lift you up.Navigating the often-uncharted waters of disability parenting, our conversation extends to the wider aspects of entrenched systems that impact families like ours. The frustrations with healthcare policies, the inadequacies of insurance systems, and the fight for necessary resources are all on the table as we discuss Sarah's own experiences within Illinois' challenging framework. It's not just a dialogue but a rallying cry for collective advocacy and systemic change. And amidst these heavyweight topics, we also celebrate the small victories, like achieving milestones and acquiring adaptive equipment, because joy and gratitude are just as vital to our stories as the obstacles we confront.Drawing on her background as a special education teacher, she underscores the indispensable role parents play in shaping their child's educational journey. The chapter on empowering parents in special education reveals strategies for more impactful and collaborative IEP meetings, highlighting the importance of parents' insights and strengths. We conclude with a powerful message of hope and support, reminding listeners of the monumental impact they have in their child's life. We urge families to harness their innate strength, to lean into the support network around them, and to keep moving forward on the path to accessibility and inclusion. Share this episode with someone who could use a reminder that they are not alone, and join us as we continue to support and empower each other through every challenge and triumph.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Discover the transformative power of Snyder's Hope Theory as it intertwines with the aspirations and resilience of children facing medical challenges. Ashlyn Thompson, joined by the compassionate child life specialist Kimberly Flood, unravels how setting realistic goals can fortify a young one's emotional landscape. Throughout our heartfelt discussions, we shed light on the delicate dance between parenting and advocating, all while fostering independence and self-esteem in our brave little warriors.Taking a deep dive into the nuances of goal-setting, we connect with families from various walks of life, learning how they tailor their approach to celebrate each small triumph. Kim Flood brings invaluable insights from her practice, Bridge to Bravery, illustrating the profound impact of play in reaching developmental milestones and the art of being your child's unwavering champion. We don't just talk about challenges; we celebrate the joyous moments that bond siblings, ensuring every family member feels cherished despite the demands of medical care. As we round off the week, I warmly invite you to lean on the strength of our shared experiences through the Charlotte Hope Foundation. Here, your stories of perseverance and hope resonate, reminding us all that we are part of a larger, supportive community. Subscribe and join us on this journey, where every parent is equipped to raise resilient children amidst adversity, and every child is encouraged to reach for the stars.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

In Part 2,  Emily & Ashlyn examine the intricacies of Snyder's Hope Theory, revealing how it can ignite creativity and lead to innovative treatment options. We delve into the importance of seeking multiple medical opinions and building a robust support network, sharing stories that highlight the transformative journey from acceptance to active pursuit of the best care for our children.Navigating the emotional landscape of parenting a child with special needs is akin to steering a ship through stormy seas—daunting yet possible with a steadfast mindset. This episode emphasizes the power of emotions in shaping our experiences and the value of a motivated mindset in fostering personal and creative solutions for our children. By adopting positive self-talk and reframing our narratives, we uncover strategies to combat feelings of inadequacy and reinforce our agency. Our dialogue doesn't shy away from the realistic aspects of hope, ensuring we view it as a strategy for better outcomes, not a magical cure.In life's most tumultuous chapters, spirituality and faith often become the anchors that keep us grounded. We reflect on their indispensable role in providing solace and guidance, especially when faced with critical decisions regarding our children's well-being. You'll hear how faith can be a source of comfort, assuring us that we're part of a larger plan and never alone in our struggles. Remember, reaching out is a sign of strength, and Charlotte's Hope Foundation is here to extend a helping hand. By sharing our stories and connecting through this platform, we pave the way for hope and support to flourish in the lives of those who need it most.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

In Part 1, Snyder's Hope Theory takes the spotlight, unveiling its profound impact on navigating life's hurdles, especially when it comes to  parenting children facing medical challenges.  As we dissect the elements of hope—goals, pathways, and agency—we translate them into tangible strategies for fostering resilience, both in harrowing times and the mundane stretches of everyday life.The conversation takes a turn through the festive season's joy, reflecting on the importance of family and health.  As the rhythm of routine beckons with the return of school bells, we reflect on the simple joys and trials of parenting, from the evolution of homeschooling to creating a 'comfort box' that grants Charlotte the gift of self-soothing during the night.Lastly, hope shifts from an abstract emotion to a concrete mindset, a tool for advocacy and navigating the labyrinth of life's challenges. We dissect the pragmatic side of hope, illuminating how it can bring solace and solutions to the daunting journey of raising a child with medical needs. By sharing our experiences and the comforting echo of community support, this episode is an invitation to a sanctuary of shared stories and encouragement. So tune in, and let's walk together on this path of empowered growth and relentless hope.Additional Resource:"Snyder Hope Theory" by Society Supports Alliance - this is not our video: https://youtu.be/zTVVaVIE9yw?si=LXWUftTbHYVhIFo1We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Navigating the unpredictable journey of parenting a child with medical challenges can feel like sailing in uncharted waters. But imagine finding a constellation of hope that guides you through the darkest nights. That's the essence of our latest conversation, where we share intimate experiences of hospital holidays, the strength it takes to smile in the face of adversity, and the infectious joy of celebrating every small victory. Our stories, including sweet Christmas anecdotes, will warm your heart and remind us all of the resilience that defines families like ours.The festive season often paints pictures of joy and togetherness, but for many of us, it comes with its own set of challenges. In the tender retelling of Emily's daughter Charlotte's NICU journey during Christmas, we uncover the serene moments amidst the chaos, allowing for a deep reflection on what truly matters. We also extend our narrative to celebrate the excitement and hope of the New Year, even as we deal with unforeseen health scares and the constant adaptation required to keep our little ones safe and happy. These stories aren't just ours; they resonate with anyone whose love for their child is the beacon that shines through the toughest storms.This episode doesn't just recount past experiences; it's a clarion call to join hands as we forge a supportive community for parents on similar paths. We're catapulting into 2024 with an open invitation for you to help shape our new program—created to honor milestones, foster connections, and be a non-judgmental space where laughter, tears, and encouragement flow freely. We're more than just voices in your ear; we're fellow travelers on this profound journey, and together, we're building a lighthouse to guide us all to shore. Join us, share your story, and be part of a community where every parent is equipped, capable, and never alone.We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.To get more personal support, connect with us directly at: CharlottesHopeFoundation.org Email: Contact@CharlottesHopeFoundation.orgFacebook: Charlotte's Hope FoundationInstagram: CharlottesHopeFoundationIncGet your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon