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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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 Hardikar
5. 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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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-exstrophy

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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

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.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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