Empowered by Hope: Recent Episodes
Emily K. Whiting and Ashlyn Thompson
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Send us a text, we want to hear from you!
This open conversation between co-hosts, Emily & Ashlyn, offers clear language, practical insight, and zero judgment for parents, caregivers, and anyone walking the tightrope of medical advocacy and family life.
What changes when the caregiver’s well-being becomes the foundation of the family—not an afterthought squeezed into the margins? We dig into the real-world difference between mental well-being (clear thinking, decision-making, stress management) and emotional well-being (awareness, regulation, expression), and show how both systems work together when you’re navigating complex care, hospital stays, and the relentless logistics of raising a medically complex child.
We share a raw, honest arc—from coasting on grit to running on fumes—and the moment a therapist reframed anxiety through the lens of modeling. Kids don’t just hear our words; they absorb our state. When we pause to name feelings, set a 20-minute boundary for a solo walk, or ask for help before we explode, we’re teaching emotional regulation in real time. That’s not selfish; it’s skill transmission that lifts the whole household. You’ll hear why survival mode makes “take care of yourself” feel impossible, how delayed processing can hit when the fires calm, and how grace—not guilt—creates the space to refuel without apology.
We connect the dots between caregiver health, fewer blow-ups, better decisions, calmer hospital interactions, and a higher quality of life for every member of the family. We also point you to a companion blog with expanded reasons and resources, plus a preview of our next chapter on the “how” of making change stick in a busy, unpredictable reality.
If this resonated, subscribe, share it with a friend who needs it, and leave a quick review to help other caregivers find these tools. Tell us: what’s one small refuel you can commit to this week?
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
A powerful new anthem is available for parents walking the complex medical journey with their children. Emily Whiting sits down with singer-songwriter Gina Brooklyn to unveil "Through Every Storm," a song created specifically for the Parent Empowerment Network community that captures the heartache, hope, and profound love that defines raising a medically complex child.
The song's journey began over a year ago when Gina, moved by the mission of supporting parents through medical complexity, set out to transform Emily's heartfelt words into music. "Every second, every moment that I get to love you is such a gift," begins the lyrical journey that acknowledges both the privilege and pain of loving a child through medical challenges. What makes this collaboration uniquely powerful is how it balances hopeful realism – neither glossing over struggles nor surrendering to despair.
In a surprising twist of providence, shortly after writing this song for others, Gina found herself battling serious health challenges of her own. Following a severe COVID infection, she received diagnoses of POTS, mast cell activation disease, and hereditary alpha tryptasemia – experiences that brought new depth to lyrics like "If it rains or if it pours, His love will carry you through every storm." Gina vulnerably shares this personal journey, revealing how her own medical complexity has deepened her connection to the song's message.
"Through Every Storm" releases in late August, with 50% of all proceeds directly supporting Parent Empowerment Network's mission. A beautiful music video featuring Charlotte and Emery will follow on YouTube. Whether you're sitting at a NICU bedside, up at 2 AM with a child in pain, or simply needing a reminder that you're not alone, this song offers a musical sanctuary where weary parents can find rest. Download it, share it, and let it carry you through your own storms – while helping us continue supporting families just like yours.
Links to view and download "Every Storm": https://lynkify.in/song/through-every-storm/jD2JXqMe
YouTube Video: https://www.youtube.com/watch?v=dQ0BRnPv7nM
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
When you’re caring for a medically complex child, you need help—but it’s overwhelming and exhausting to field the constant “Let me know how I can help,” “Just call me if you need anything,” or “What can I do for you?” messages. The decision fatigue for parents in crisis is grueling. We desperately need the help, but our supporters need a clear path that empowers them to actually be helpful.
That’s why Ashlyn sat down with Jordan Arogeti, co-founder of Support Now, to share a free support registry every family needs to know about. Most of us are already juggling donation platforms, blogs, group texts, social media pages for updates, and meal train sign-ups… but what if all your needs—meals, childcare, fundraising, prayer requests, volunteer help, and more—could live in one customizable, evolving registry? Hallelujah.
Support Now is built to be supporter-led, giving your friends and family a clear path to help. They can see exactly what you need, choose how they want to contribute, and adapt as your family’s needs change—all without adding to your plate. Unlike tools that fizzle out after a few weeks, the registry is designed for sustainable, long-term support during the toughest seasons.
This conversation is personal. Ashlyn was introduced to Jordan by PEN Board Member Abby Zachritz (aka Advocacy Abby), Support Now’s Director of Family Advocacy. Together, they’re making it easier to rally your “village” in real life, not just on social media.
If you’ve ever felt the weight of being asked “What can I do?” when you’re too exhausted to answer, this episode is for you. Hear why Parent Empowerment Network wants every family to know about this life-changing resource—and how Support Now is transforming the way communities show up for each other.
Resources from this episode:
https://www.supportnow.org/
Jordan's TEDx Talk: https://www.supportnow.org/
Support Languages Quiz: https://www.supportlanguages.com/
Advocacy Abby: https://www.advocacyabby.com
Connect - Database for Medical Expense Grants: https://grants.supportnow.org/
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
The journey of caring for a child with rare disease or complex medical needs often leaves parents and caregivers isolated in their experience. While friends and family genuinely want to help, many struggle with knowing how to truly support without overstepping or saying the wrong thing.
Amy (Board) Bradford brings her decades of experience working with rare disease communities to share powerful, actionable strategies for supporting caregivers effectively. This conversation goes beyond the typical "let me know if you need anything" platitudes to provide specific ways supporters can take meaningful initiative.
The episode reveals three foundational approaches that can transform how we show up for caregivers: first, taking time to learn the specialized medical language of a condition rather than expecting caregivers to constantly educate; second, remembering to ask about the caregiver's emotional experience rather than focusing exclusively on the child's medical journey; and third, creatively adapting environments and activities to be more inclusive without burdening families with all the planning.
As Amy shares from her experience running camps for children with bleeding disorders, "We instilled in our staff that this was a week that we would never say no to our children." This philosophy of creative problem-solving and adaptation offers a powerful model for how supporters can reframe their thinking to create more inclusive experiences.
Whether you're a friend, family member, or community supporter looking to make a meaningful difference in a caregiver's life, or if you're a caregiver wanting to help your support circle understand how to better show up for you, this episode provides the language and practical steps to strengthen these crucial connections. Send this episode to someone in your support circle today – no explanation needed.
About Amy (Board) Bradford: Amy is an accomplished patient engagement leader and global storyteller with the proven ability to build unwavering patient community connections in complex environments. She is the Director of Patient Engagement of Believe Limited, an agency dedicated to the Rare Disease, Health and Wellness, and Patient Connection and Community space.
Believe Limited, The Patient People: https://www.believeltd.com/
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Child Life Specialist, Brittany Luther, brings over twenty years of expertise to answer these questions in this emotionally powerful conversation. She explains how children naturally communicate their fears and process trauma through play—whether that's with specialized medical toys from organizations like The Butterfly Pig or simply through creative exploration with everyday items.
Brittany introduces two transformative concepts parents can immediately implement: "wonder" and "pause." By creating unhurried space to wonder with your child about their experiences and feelings, you open pathways for them to express themselves in their own time and way. This practice helps children work through medical trauma at their developmental level, restoring their sense of control and agency.
The discussion explores age-appropriate preparation strategies for medical procedures—from paper chain countdowns for preschoolers to detailed preparation plans for teenagers. Through the story of young Maren's journey with her stoma care, we see how consistent, honest communication paired with simple distraction techniques gradually transformed a painful daily procedure into a moment of empowerment and connection.
Perhaps most touching is the validation for parents who've had to perform painful procedures on their children. The guilt is real, but as Brittany and host Ashley demonstrate, these moments can ultimately strengthen the parent-child bond when approached with honesty, compassion, and support. Seeking help from child life specialists isn't a sign of failure—it's a powerful way to expand your child's circle of support and reclaim the joy of simply being their parent.
*After the episode recording, Brittany’s time was spent with a warm cup of tea and “Lemon Swirls” both in the comfort of her beautiful office and in the McGill Rose Garden for her quiet reflection and work to rest her voice!
Brittany Luther is a Certified Child Life Specialist with nearly 20 years of experience supporting children and families through medical challenges. With advanced training from Duke, Vanderbilt, and the Children’s Hospital of Philadelphia, she has worked in high-acuity settings including emergency care, oncology, and neurology. Now based in Charlotte, she combines part-time hospital work with her private practice, where she helps children, teens, and families navigate seasons of transition, diagnosis, and grief with compassion and hope.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
MaryJenner, a nurse with a creative heart, founded The Butterfly Pig after writing a children's book about embracing differences—a theme that would become central to her mission of transforming pediatric medical experiences through play. Her company creates realistic medical simulation tools that children can use with their favorite stuffed animals, helping them process everything from IV placements to ostomy care in a safe, empowering environment.
The power of these medical toys extends far beyond simple distraction. When children experience procedures as something happening to them, they often feel powerless and afraid. But when they can parallel process by caring for their own "patients," something remarkable happens—they begin to understand, cooperate, and even take pride in their medical journeys. Ashley shares how her daughter went from requiring restraint during stoma care to proudly showing her stoma to friends at school after playing with a doll that had the same equipment.
This transformation occurs because children naturally learn through play. By creating approximately 80 different realistic medical devices scaled for toys, The Butterfly Pig taps into children's innate processing mechanisms. Parents and healthcare providers report children who previously couldn't sit still during procedures becoming engaged participants when they have their own medical tools to work with. The benefits extend to siblings too, who develop understanding rather than fear when they can engage with medical equipment through play.
What began as a creative project has evolved into a movement that's changing how families experience healthcare. The Butterfly Pig has introduced a Wishful Wings program where supporters can purchase toys for families who need them, creating a community of care around children with medical needs. As Mary explains, each medical experience gives children "a different type of superpower" they can eventually use to help others, transforming challenges into strengths that shape who they become.
https://thebutterflypig.com/
https://www.instagram.com/TheButterflyPig
https://www.facebook.com/TheButterflyPig
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
How do you hold on to hope when you know your child is dying—and there’s no diagnosis, no cure, and no roadmap forward?
Co-hosts, Ashlyn Thompson & Ashley Milbourne are joined by Dr. Tasha Faruqui—award-winning pediatrician, rare disease parent, and now debut author—who invites us into the heart of her story, which inspired her forthcoming memoir: Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief, releasing September 16, 2025.
Dr. Faruqui's second daughter, Soraya, was born with a rare, undiagnosed condition that remains a mystery more than thirteen years later. Though trained in medicine, Tasha found herself unprepared for the emotional and existential weight of parenting a child with a limited life expectancy. What she searched for—but couldn’t find—was guidance through anticipatory grief: the complex, quiet mourning that begins long before loss. So, she wrote the book she needed—one that shines a compassionate and unflinching light on this often-overlooked experience faced by so many families.
Keep Your Head Up is not only a memoir—it’s a love letter to parents navigating the unthinkable. With honesty, warmth, and hard-earned wisdom, Dr. Faruqui offers a blueprint for how to keep living, loving, and even laughing in the midst of prolonged uncertainty. Through this conversation, she opens up about how she balances motherhood with medicine, why self-care is not selfish, and how her definition of hope shifted from curing her daughter to cherishing her—one beautiful, present moment at a time.
✨ Keep Your Head Up is available September 16, 2025. Pre-orders are available now on Amazon.
✨ 100% of proceeds will benefit organizations close to the Faruqui family’s heart.
This isn’t just a conversation—it’s a glimpse into the soul of a book that will change the way we think about parenting, medicine, and what it means to keep showing up with love. If you’ve ever faced the unknown, this is the episode—and the story—you didn’t know you needed.
Join her Instagram community (@thefaruqui5) for real-time insights, resilience, and inspiration!
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
As parents of children with complex medical needs, our hearts often ache with worry about our other children. Are they getting enough attention? Will they feel less important? Do they resent their sibling's conditions? These questions haunt us during late-night hospital stays and therapy appointments.
What we rarely discuss, though, is the remarkable beauty that emerges in these siblings' lives. Through heartwarming stories like seven-year-old Nora proudly telling her class about her sister's rare condition on Rare Disease Day, or Cole developing an extraordinary voice at a young age, we discover the gifts hidden within our challenging journeys.
Ashlyn & Ashley share their personal experiences raising both medically complex and typically developing children, revealing how these siblings develop profound empathy, advocacy skills, problem-solving abilities, and perspective far beyond their years. They discuss the importance of taking off what they call the "Sherlock Holmes hat" – that constant problem-solving mode parents develop – so that we parents can simply enjoy our children and create meaningful connections through small moments like car rides or special traditions.
Perhaps most striking is the resilience these children show. Despite hospital stays that separate families and the inevitable imbalance of attention, these siblings often demonstrate remarkable forgiveness, adaptability, and joy. They remind us that children have an extraordinary capacity to live in the moment and find happiness within challenging circumstances.
This conversation offers hope that while your family's path may look different than imagined, your children are developing unique strengths through challenges most families never face. Your "typical" children aren't just surviving this experience - with your love and attention to their needs, they're thriving in ways that will serve them throughout their lives.
Recommended Resources:
Supporting the Siblings with Wendy Plant, PhD - Excellent webinar for parents presented by Courageous Parents Network
Courageous Parents Network: Sibling Support
Child Life on Call: Supporting Siblings: How Child Life Specialists Can Help
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Every parent of a medically complex child wonders: Will my child grow up knowing how deeply they are loved? Will they appreciate how hard I fought for them? In this episode, we bring you a powerful answer straight from someone who’s been there.
Annelise Frazier, born with a rare and complex medical condition, shares her story of growing up with surgeries, complications, and hospital stays—but more importantly, growing up surrounded by love. She reflects on the biggest gift her parents gave her: they loved her so boldly and advocated so fiercely that she never felt different or defined by her diagnosis. Instead, she felt like a kid—just a kid—who was deeply cherished.
For parents in the thick of this journey, this episode is a glimpse into the future—a message of reassurance that your child will remember the love more than the fear, the joy more than the hardships. Annelise’s perspective will remind you that your love and advocacy are not just necessary, but transformative.
Join Ashlyn & Ashley for this heartwarming conversation that will uplift and encourage you to keep going, keep loving, and keep believing in the beautiful life ahead for your child. *Spoiler, Annelise has the same condition as Ashlyn & Ashley's daughters!
Make sure to subscribe, share your thoughts with us, and connect with our community—we are all in this together!
Annelise Frazier is a small town bookstore owner diagnosed with Classic Bladder Exstrophy, Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Mast Cell Activation. She has been chronically ill since birth, but does not let that define her. She loves reading romance novels, baking allergy friendly treats, spending time with her family and raising her pet cat Fig and rescue Border Collie, Hollie. When not at her bookstore, she and her husband enjoy traveling the country searching for the greatest history museums. Annelise has spoken out for children with disabilities at many conferences and intends on using her background in medical research to provide a safe space for all those struggling with the daily life of medical complexities.
Shop & Support Annelise: Pig City Books
Bookstore Website: https://www.pigcitybooks.com/
Online Bookstore: https://bookshop.org/shop/pigcitybooks
Online Audiobook membership:
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Leah Darrow, renowned public speaker and mindset coach, joins Emily Whiting on the Empowered by Hope podcast to share her inspiring journey from faith-based public speaking to impactful mindset coaching. As mothers with children facing complex medical challenges, Leah and I connect deeply over our shared experiences in balancing personal passions with the demands of family life. Through her programs like Power Made Perfect and Motivated Mompreneur, Leah sheds light on how a Christ-centered approach can empower individuals to thrive and overcome life's obstacles.
Leah opens up about the crucial role mindset training played during her time in the NICU, both for herself and her son. Drawing from a decade of personal development and unwavering faith, she demonstrates how mindset practices can become second nature in times of crisis.
Mindset Practices:
- Let go of what you cannot control - write down what you can control and focus on that
- Your energy and your words matter - choose words of hope
- Do not try to go back to the life you had before
- Practice forgiveness and radical mercy, for yourself and others
Her story is a testament to resilience and the transformative power of focusing on what we can control, offering guidance to anyone grappling with intense emotional and physical challenges.
This episode emphasizes the strength found in community support, reminding us that by coming together, we can navigate life's challenges with grace and hope. Join us as we encourage each other to extend mercy to ourselves and others, fostering resilience and embracing change to build a brighter future.
Leah Darrow is a mindset coach, speaker, and mom of seven who helps women transform their lives through personal growth and faith. As the host of The Leah Darrow Podcast and creator of Power Made Perfect, Leah empowers women to live intentionally and unlock their God-given potential. Connect with her on Instagram @leah.darrow or at leahdarrow.com.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Join us for an exploration of pediatric feeding challenges as we sit down with Jaclyn Pederson, the dynamic CEO of Feeding Matters. Through Jaclyn's personal journey and professional insights, we uncover the critical, yet often sidelined, issue of pediatric feeding disorders. In a world where validation for these struggles was once elusive, Feeding Matters has championed the recognition of pediatric feeding disorder as a standalone diagnosis, bringing a sense of acknowledgment and relief to countless families.
This episode is a treasure trove for parents and caregivers seeking to understand the intricacies of pediatric feeding disorders. We highlight the subtle signs and symptoms that may suggest a feeding issue, and the pivotal role of parental intuition in navigating these challenges. As Jaclyn shares, finding knowledgeable care can be daunting in this emerging field, but she offers encouragement and resources that empower parents to become strong advocates for their children. Feeding Matters equips families with tools to effectively communicate with healthcare providers, ensuring that they are heard and understood.
The conversation doesn't stop at identifying the problem. We delve into the empowering work Feeding Matters does to support families, from their comprehensive online resources to the Power of Two coaching program. This episode promises insights and support that can make a significant difference in the lives of children and families touched by feeding disorders.
Resources:
FeedingMatters.org
Facebook
Instagram
Jaclyn Pederson, MHI
A system thinker and positive team builder, she uses transformational leadership principles to develop energized and efficient workgroups that influence significant organizational and systemic change for all affected by pediatric feeding disorder –such as the development of the expanded PFD Alliance. Jaclyn also manages Feeding Matters’ strategic partnerships with numerous professional associations including American Speech-Language-Hearing Association (ASHA), American Society of Parenteral and Enteral Nutrition, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Step into the empowering world of healthcare advocacy with us as we welcome the inspiring Melissa Paige, Co-CEO of the Healthcare Advocate Summit. A recognized expert in patient access programs and navigation, Melissa combines her extensive medical knowledge, diverse pharmaceutical expertise, and leadership skills to drive process improvement and redesign workflows that enhance efficiencies in healthcare. Her unwavering passion for the well-being of patients fuels her relentless pursuit of breaking down access barriers and advocating for the highest quality care.
In this episode, Melissa shares her extraordinary journey as a patient advocate and entrepreneur, offering unique insights from her career. As an outspoken advocate, licensed pharmacy technician, and educator, Melissa has dedicated her life to making healthcare more accessible and compassionate. She applies the "Know, Think, Feel, Do" strategy to every endeavor, creating remarkable and meaningful experiences for patients, caregivers, and industry professionals alike.
Together, we explore the intricate landscape of accessing medication for rare diseases, drawing from Melissa's personal experiences as the eldest sibling of a brother with Duchenne muscular dystrophy. Melissa sheds light on practical strategies for overcoming obstacles in the healthcare system, including the critical role of financial counselors, pharmacy technicians, and advocacy organizations.
As a co-host of the Healthcare Advocate Summit, an annual conference For Advocates, By Advocates®, Melissa highlights the importance of collaboration between pharmaceutical companies, advocacy groups, and patients in addressing the unique challenges faced by those with orphan rare diseases. Through engaging discussions, we underscore the power of asking "why not" to push boundaries and inspire persistent advocacy, ensuring no one feels isolated or overwhelmed in their healthcare journey.
Join us in this vital conversation that champions hope, compassion, and collaboration in the fight for better healthcare outcomes.
Connect with Melissa Paige:
LinkedIn
Healthcare Advocate Summit
National Association of Medication Access & Patient Advocacy
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Today's guest is Carleigh Joseph-Olivas, a licensed perinatal social worker, full spectrum doula, maternal mental health therapist, and parenting coach. Her passion for supporting women and families through the profound transformations of pregnancy, childbirth, and the postpartum period makes her the perfect expert to guide us through today's topic.
This two part episode focuses on the emotional journey of pregnancy, delivery,and postpartum, particularly when faced with medical complexities. Emily and Carleigh explore the grief that often arises when childbirth does not go as planned while emphasizing the importance of trusting oneself and fostering community support for parents.
Part 1:
• Understanding the grief associated with unplanned childbirth experiences
• The importance of nurturing mothers alongside their newborns
Part 2 (start at 31 minute mark):
• Rebuilding trust following negative medical experiences
• Techniques for parents to express and process emotions
• Encouraging community support and reaching out for help
• Reclaiming one's inner voice as a tool for navigating parenting challenges
• The role of parents as fierce advocates for their children
About Carleigh Jospeh-OlivasAs owner and founder of Nurtured Roots Doula and Family Services, Carleigh has established a practice that answers the question that inspires her work, ‘Everyone wants to hold the baby. Who holds the mother?” Her previous work in providing supportive counseling and connection to resources for parents of children with medical complexities impacts the scope of her dedicated service to families beyond the labor room. With a deep commitment to ‘restoring the village’, Carleigh is determined to build a supportive network that nurtures the well-being of mothers, strengthens family bonds, and fosters a healthy start for infants and children. By addressing the emotional, mental, and social needs of parents, she aims to create a safe and empowering environment where families can thrive together.
A future midwife and fierce advocate for maternal health initiatives, Carleigh envisions a world where birthing and parenting is an empowering and deeply connected experience. Through her work, Carleigh is dedicated to educating, supporting, and addressing disparities in maternal care while honoring the emotional and spiritual bonds between mothers and their children.
Instagram: Nurturedrootshousto
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
What if a simple bark could bring a little holiday miracle into your life—alerting you to an impending health crisis faster than any device? In this special holiday episode of Empowered by Hope, we’re spreading the spirit of giving and hope as we explore the incredible work of Medical Mutts Service Dogs with Liz Boskovich, Director of Development. Discover how shelter dogs, once overlooked, are transformed into life-saving companions, delivering comfort, safety, and joy to families in need—just in time for the season of miracles.
We share the heartwarming story of Patch, a once-lost pup who found his purpose with a young boy named Nick, becoming not only his life-saving companion but also a treasured part of the family’s holiday memories. From detecting seizures to managing PTSD, depression, and diabetes, these remarkable dogs offer life-changing support to individuals facing complex medical needs.
Together, we unwrap the details of the application process, costs, and resources like fundraising and grants, ensuring that hope remains accessible to families everywhere. This season reminds us of the power of connection, resilience, and second chances—whether for a shelter dog or a family seeking support.
Tune in for a heartwarming message of hope, resilience, and community, and remember: miracles come in all shapes, sizes, and sometimes even with wagging tails. Don’t forget to share your own stories with us as we continue building a supportive community together.
Learn more at https://www.medicalmutts.org/
Facebook: https://www.facebook.com/MedicalMutts
Instagram: https://www.instagram.com/medicalmuttsservicedogs/
TikTok: https://www.tiktok.com/@medicalmutts
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Discover the journey behind the rebranding of our organization to the Parent Empowerment Network, where our mission to uplift caregivers of children with complex medical needs remains steadfast. In this episode, we reveal the thoughtful process of selecting a new name that truly reflects our dedication to supporting those in the parent role. Uncover the significance of our new logo, a beacon of empowerment and hope with sun rays symbolizing new beginnings. We also invite you to explore our freshly launched website, parentempowermentnetwork.org, a hub for connection and community, where you can join us in celebrating this exciting milestone.
Emily and Ashlyn share insights on navigating the challenges of parenting during tough times, emphasizing that no caregiver should feel isolated in their journey. They assure you of your capability and readiness to tackle the demanding tasks ahead for your children's well-being. With a warm invitation to subscribe and share your personal experiences, they aim to build a supportive network that thrives on shared wisdom and encouragement. Spread the message to others who might find solace in knowing they're not alone, especially when hope seems distant. Let's walk this path of resilience and solidarity together.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
The ceaseless demands of caregiving could be captured in the powerful metaphor of "death by a thousand paper cuts." Join us as we open up about the raw emotions and daily challenges faced during National Family Caregiver Appreciation Month. Ashlyn and Emily share their deeply personal stories, revealing the overwhelming cycle that comes with managing children’s return to school while juggling relentless caregiving tasks. Even amidst the chaos, there's a shared understanding of the necessity to find calm and peace, and we explore how acknowledging these struggles is crucial in supporting each other.
Imagine dealing with a child’s persistent asthma symptoms on top of already complex medical needs. In our heartfelt discussion, we touch on Charlotte's story, shedding light on how such health challenges ripple through family life. The strain of missed school days, the emotional toll on parents, and the constant fear of falling behind are more than minor issues—they’re daily battles. We reflect on how these health issues affect not just the child but every corner of family life, urging both understanding and a positive outlook amidst the stress.
Finally, we emphasize the importance of a robust support network, introducing the Parent Empowerment Network as a lifeline for those feeling overwhelmed. This community resource offers a place for parents to connect, share their stories, and find strength among like-minded individuals. We invite listeners to engage with this compassionate community, whether through social media or the foundation’s website, nurturing a space where shared experiences spark empowerment and hope. Join us in this episode as we offer a beacon of support, reminding caregivers everywhere that they are not alone.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
Jamie Olson, publisher of "Uniquely You Magazine," joins us to share her transformative journey from isolation to empowerment. Her story begins with her raising her 12-year-old son with autism, epilepsy, and nonverbal communication, and her relentless quest to find community and resources. Dive into how her involvement with Purposeful Living Inc. not only healed her but also inspired her to create a lifeline for other parents through her magazine.
As COVID turned the world upside down, Jamie saw a divine opportunity to launch a special needs magazine, drawing from her experiences and a lack of existing resources. "Uniquely You Magazine" became a beacon of hope for families with special needs children, initially in Indiana and now expanding to Ohio and Michigan. Jamie shares how this free monthly resource connects over 30,000 families with vital information. Hear about the magazine's mission to celebrate the stories and milestones of individuals with disabilities and its powerful community impact.
We also explore the profound healing that comes from sharing personal stories, especially for those newly navigating the complex world of medical diagnoses. Jamie emphasizes the necessity of building support circles, offering practical advice and resources like "The Surrender Experiment" by Michael Singer. She passionately underscores the strength found in vulnerability and community connection, encouraging listeners to reach out if they need support. Together, we remind everyone that they are not alone on this journey, reinforcing the power of community, empathy, and shared experiences.
"At Uniquely You Magazine, we believe in the transformative power of storytelling. Sharing personal experiences not only fosters connection but also empowers individuals and families to navigate their unique journeys with confidence and resilience.
Join us in supporting this vital publication and experience the profound impact of sharing your story. Explore our archive of past issues, connect with fellow community members, and discover invaluable resources:"
Indiana: https://linktr.ee/uniquelyyouindiana
Michigan: https://linktr.ee/uniquelyyoumichigan
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
We're thrilled to spotlight Gabie Benson, owner and founder of Sprout Fundraising, our insightful fundraising and leadership coach, who has been pivotal in elevating our nonprofit endeavors with her expert guidance and empathetic approach.
Have you considered starting a nonprofit in honor of your journey with your child's medical challenges? If so, you aren't alone and that's why we invited Gabie to speak to you today. With over 20 years of nonprofit fundraising experience, she shares a passion for empowering nonprofit founders, especially those who feel like underdogs. Gabie and Ashlyn share personal stories, from the challenges faced with our children's medical needs to the societal complexities of parenting, resonate deeply with the struggles of many parents. Through empathy and shared experiences, we celebrate the resilience and grace required to thrive in these roles, all while exploring the unexpected joys of helping others achieve their missions.
For those contemplating launching a nonprofit, this episode offers a wealth of knowledge to guide you through the essential steps. From researching community needs and establishing a strong board to crafting a clear mission and vision, we lay out the groundwork for creating a successful organization. We delve into the emotional complexities of fundraising, emphasizing the importance of community support and resilience. With insights from Gabie Benson, we aim to inspire and equip you with the tools needed to embark on your own nonprofit journey, fostering a network of support and hope along the way.
Connect with Gabie:
https://www.sproutfundraising.com
LinkedIn
Calendly
Instagram
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
Send us a text, we want to hear from you!
"What did I do wrong?"
"How did I cause this?"
"Is this my fault?"
Some form of this question is the first thing to cross the mind of almost every single parent at what we refer to as "the moment of impact" - the moment a parent learns their child is not ok and requires medical intervention.
Take a trip back with us to our original episode of Empowered by Hope as we share our emotional journeys through parenting children with complex medical needs, focusing on the ever-present shadow of guilt. Ashlyn opens up about the life-altering decision to venture into medical tourism, seeking a transformative surgery for her daughter Emery in London. Meanwhile, Emily reflects on her tireless efforts to provide the best care for her daughter Charlotte, navigating a labyrinth of specialists and daily challenges. Together, we explore the heartache and resilience that come with these struggles, offering our insights and support to those walking a similar path.
Unravel the heavy emotions that accompany a challenging diagnosis as we dissect the guilt that often haunts parents of children with medical complexities, no matter the diagnosis or severity. Through candid discussions, we emphasize that such feelings are not a reflection of parental inadequacy but rather a natural part of the journey. We tackle the difficult reality of balancing heart-wrenching medical decisions with the love for our children, and how guilt can blur the truth of our devotion. By sharing our personal experiences, we aim to provide clarity and reduce self-judgment, allowing parents to navigate their path with more confidence and self-compassion.
Community and connection are lifelines in these challenging times, and we emphasize their importance by encouraging open communication and shared stories. We discuss practical strategies for managing guilt and finding hope, such as writing letters to oneself or seeking solace in spiritual beliefs. Our goal is to create a welcoming space where listeners feel seen and understood, reinforcing that no one is alone in their journey. We invite you to connect with us, share your stories, and spread the support to others who might benefit from these heartfelt conversations.
And please, remember, your child's diagnosis is NOT your fault.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
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
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
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.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
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.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
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/Details
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
"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-d07eb8b2
Get Abby's FREE Workbook: 7 Key Topics: Asking Questions of Your Insurance or Medicaid: https://www.advocacyabby.com/#row-a4dac49b
Other ways to connect with Advocacy Abby:
Website: https://www.advocacyabby.com/#headline-0eda7099
Instagram:
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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:
- Make a direct donation through our event website.
- Share this invitation with your network, inviting them to join our movement of hope and compassion.
- Spread awareness by sharing our mission and podcast, Empowered by Hope, with your community.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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=en
Accessible Adventures LinkTree: https://linktr.ee/Accessible.adventures
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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/kylact
Kyla Thomson: https://linktr.ee/kylact
Instagram: @kylact https://www.instagram.com/kylact/
TikTok: KylaCT https://www.tiktok.com/search?q=kylact&t=1709190850795
Kyla is available to be your next Keynote Speaker: https://bella-brave.com/en-usd/pages/speaking-services
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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=LXWUftTbHYVhIFo1
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
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.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Bridging the gap between children's fear and understanding of medical procedures is no small task. That's where our guest, Kim Flood, a child life specialist from Columbus, Ohio, steps in. Kim has been an invaluable beacon of hope in Emily's journey, helping Charlotte find confidence and coping skills that work for her. She transforms the cold, sterile hospital environment into a safe space where honesty, play, and resilience take center stage. Listen in as we share our personal experiences and discuss the transformative power of child life specialists in pediatric care.
Navigating the medical world can be daunting for both children and parents alike. From coping with pain and traumatic procedures to advocating for a child's needs, the challenges can be overwhelming. But Kim, armed with years of experience in multiple departments such as organ transplant floors and burn units , shows us the importance of fostering emotional well-being and maintaining a positive association with the medical environment. In our candid conversation, we explore the value of psychosocial support, the necessity and power of a coping plan, and the significance of letting children witness healthy expressions of emotions.
Finishing off our discussion, we touch upon the magic of celebrating small victories and the significance of community and support in parenting. We delve into the impact of Kim's private practice, Bridge to Bravery, designed to navigate children and families through medical needs in their own home. Our conversation underscores the importance of community and the power of resilience in the face of adversity. This podcast is more than just a storytelling platform; it's a resource filled with practical advice, shared experiences, and hope.
About Kim Flood: Kim Flood is a Certified Child Life Specialist. She has her MS in child development with a child life specialization. Kim is passionate about her work with children and teenagers. She is a mom of 3 kids. Since becoming a parent she has truly valued her child life skills when it comes to preparing kids for challenges in life. She would be honored to work with your family to help facilitate positive coping skills. Once certain conversational skills are mastered, she is certain your family will no longer need her expertise as you’ll have the skills to manage it on your own.
Bridge to Bravery: Bridge to Bravery offers child life services through home visiting, phone consults, and also video consulting.
Bridge to Bravery Blog
Click here to learn more about Child Life Specialists from Association of Child Life Professionals.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
This is a rerun of an episode from earlier this summer. Ashlyn & Emily will be back next week with a new episode. Happy Thanksgiving to everyone, we are grateful for everyone of you!
Imagine the shock of hearing a cancer diagnosis for your small child, an innocent soul you would die to protect, only to realize that dying won't change the prognosis. If that's not hard enough to imagine, add on top of that the shocking discovery that your infant is also facing their own unique medical complexities while still undergoing chemo with your toddler. That's the harsh reality our guest, Lori Szabo, and her husband, Ron, had to face. As a very experienced parent to children with complex medical needs, Lori takes us through her unexpected journey, from the initial diagnosis to the daily challenges and joys that come with raising her unique family. She offers invaluable insights into parenting a child with severe illness, yet living life beyond the medical, emphasizing the importance of unity and resilience within the family.
From snorkeling with whale sharks in the Philippines to a hilarious encounter with spicy Indian food in Kuala Lumpur, Lori has filled her family's life with rich travel experiences. She is a passionate explorer, constantly seeking to learn about different cultures. As a mother of four biological children, an adopted child, and a host to an exchange student who joined the family, Lori's love for children knows no bounds. She shares these heartwarming adventures and her family's commitment to maintain a sense of normalcy, despite the medical needs of her children.
Life may not always be a serene sail across calm waters, but Lori reminds us that there is always hope and beauty in the chaos. Balancing the needs of a sick child with the needs of other siblings can be a daunting task. However, she provides insightful strategies on how to handle the emotional dynamics of such situations. She also offers a helpful look into the process of transitioning from parent advocate to support mom as children become young adults. As we end this enriching conversation, we would like to remind you that whatever emotional storm you may be weathering, remember, you are not alone. Together, we can navigate through life's turbulent currents. So, tune in, reach out, and let's walk this journey together.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
This is a rerun of a past episode that Ashlyn & Emily want more people to listen to because it is loaded with invaluable knowledge and support for parents expecting a child with medical needs. We will be back with new episodes after Thanksgiving!
Navigating the complexities of parenthood is a challenge in itself, but what happens when you add the hurdles of medical needs into the mix? Emily had the privilege of having a heart-to-heart talk with our guest, Elaine Bishop, a seasoned care coordinator and certified nurse midwife, who has been our guiding light through the fog of the shock from the anomalies found in Charlotte at 20 weeks pregnant. Elaine's story of resilience and hope gives comfort and inspiration to all parents paddling through the same waters.
Healthcare for children is a labyrinth, especially when they can't voice their needs. Elaine has turned this challenge into her life's work, advocating for children's health from the womb to the world. Our conversation delves into the tough realities of medical treatments, the heartache of seeing your child in pain, and the triumph of standing as their voice. We also unpack the power of parental instinct - it's the unquestionable partner in your child's care team. Make no mistake, you have the right to question, understand and insist on informed consent with any medical treatment.
As the saying goes, joy and sorrow are inseparable. Elaine's wisdom shows us that the silver lining in this clouded journey is the ability to trust your instincts, adjust your expectations, and continue finding joy amidst the heartache. How do we steer through unexpected pregnancy challenges? How do we set goals for our children's healthcare? How do we advocate with trust? Tune in for this inspiring conversation, and let's navigate parenthood with hope and resilience, together.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Have you ever wondered how it feels to care for a child with complex medical needs? We've got the insider scoop for you, direct from the heart of a parent in the thick of it, battling insurance bureaucracy, juggling career advancements, and dealing with unexpected family health scares that life seems to throw as curveballs. Personal, relatable, and raw - our talk is an open book that peels back layers of fear, guilt, and the innate human capacity to endure and adapt.
In this episode, we tackle the all-too-familiar financial fears that go hand-in-hand with managing medical complexities. We share first-hand experiences about balancing medical costs, insurance, and maintaining a semblance of normalcy in family life. It's not all doom and gloom, though. We discuss resources and strategies that have been our lifeline, including the importance of accepting help and nurturing open communication within our relationships.
Finally, we delve into the emotional labyrinth of parenting a child with medical complexities. Expect conversations about fostering empathy in our children, discussing feelings of isolation and loneliness, and reminding ourselves that it's okay not to have all the answers. After all, we are all capable of more than we often give ourselves credit for. Join us for an episode that is as empowering as it is empathetic, brimming with hope for every parent navigating medical complexities. Tune in for a dose of courage, resilience, and unwavering love.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Have you ever thought about how trauma could be impacting your journey as a parent or caregiver? Be prepared to journey with me, Ashlyn, and my own therapist, Chelsea Cassel, as we break down this intricate subject. We aim to arm you with the basic knowledge necessary to recognize & understand trauma, its emotional and physical toll, and how to navigate parenting and caregiving while on your own healing path.
Throughout the episode, we explore the importance of processing trauma. We dig deep into the brain's response to trauma, with Chelsea explaining how our "lizard brain" can be overwhelmed. We delve into how trauma manifests differently in men and women, touching on reactions like guilt, anger, survivor's guilt, and lack of self-belief. We also discuss the profound power of externalizing our thoughts and feelings, either through speaking or writing, as a practical way to process trauma even if professional help isn't immediately available or a viable option for your circumstances.
In the final part of our discussion, we drive home the transformative power of understanding, acknowledging, and processing trauma. We explore how this can liberate us, allowing us to move beyond our past, without letting it define us or our children. We urge you to never minimise your trauma or compare it to others, but instead, fully recognise its impact on your life. We also highlight the crucial role that seeking professional help can play in navigating the healing journey. So join us on this transformative conversation, and let's journey together towards healing and freedom from the chains of trauma.
Guest Bio:
CHELSEA CASSEL, MA, LMFTA
Chelsea received her Master’s degree in Marriage and Family Therapy from Indiana Wesleyan University and completed her Bachelor of Science in Psychology at Indiana State University. She is familiar with a variety of therapeutic approaches and techniques that can assist with her clients getting to the source of the problems they are currently struggling with. Chelsea has experience working with a wide range of clientele such as individuals, children, adolescents, couples, infidelity, families, LGBTQ, veterans, grief, addictions and trauma. She has also worked with numerous cognitive and emotional issues such as depression, anxiety, negative self-esteem and much more. When working with couples, Chelsea’s main goal is to explore ways where the couple can get back to what made them fall in love in the first place. She wants to assist the couple in finding a stronger emotional connection and a healthier way to communicate
Chelsea considers herself a compassionate, empathetic and non-judgmental therapist who always has her clients’ best interest in mind. Therapy is a safe place in which Chelsea will assist you in exploring the past, creating peace in the present and feeling hope for the future. In her spare time Chelsea enjoys traveling, watching movies and spending time with friends and family.
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Welcome to our intimate chat about the tumultuous yet enlightening journey to acceptance when parenting special needs children. We, Ashlyn Thompson and Emily Whiting, invite you to join us as we navigate the ebbs and flows of acceptance, a state that we revisit on a regular basis, supercharged with hard-earned wisdom and grace. Listen to our personal tales of the trials and triumphs that have peppered the landscape of our own journeys to acceptance, time and time again.
This episode has us candidly discussing the unique challenges and joys we encounter as parents to children with special needs. We share how redefining "normal" and seeking support from even our pets, such as Ashlyn's new puppy Letty, can provide comfort during testing times. We also delve into "mastering" the art of being your child's primary caregiver, while simultaneously grieving the dream you thought parenting would look like. As we venture further, we touch upon the importance of letting go of unrealistic expectations, the power of advocacy, and the significance of self-care, for both ourselves and our families.
Our conversation concludes on a hopeful note, underscoring the gifts of acceptance—the miraculous ability to love our children for who they are while finding joy amidst the chaos through our evolved perspective. We reflect on our personal journeys, the struggle to come to terms with our children's medical conditions, and the importance of maintaining a hopeful outlook even during challenging times. Embark on this journey with us to find understanding, comfort, and hopefully a sense of camaraderie.
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 today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1
Subscribe to the Empowered by Hope podcast to receive alerts about new episodes and exciting updates from Charlotte’s Hope Foundation: https://charlotteshopefoundation.org/
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Do you ever find yourself wanting to ask your child's doctor(s) more questions, but find yourself holding back? Today is all about arming you with strategies to take control of medical decisions for your child. We share how we confidently question our daughters' medical providers and expand on the importance of questioning in our role as advocates. You'll learn how to push past "white coat syndrome," weigh risks and benefits of treatments, and learn the value of hitting pause so you aren't rushed into a decision before you are ready. We highlight the importance of considering the impact of these decisions on your entire family and emphasize the necessity of choice in selecting your child's medical team. It's no secret both Emily and Ashlyn are big supporters of seeking multiple opinions when possible! So press play, prepare to be empowered by hope, and together, we'll navigate these challenging waters.
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 today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1
Subscribe to the Empowered by Hope podcast to receive email updates about new episodes and exciting updates from Charlotte's Hope Foundation (scroll down to see where you submit your information): https://charlotteshopefoundation.org/
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
There is so much joy to be had in the midst of the chaos. That is the key takeaway as Emily K. Whiting shares a month in the life of pediatric complex care for her daughter Charlotte.
As Emily recounts the last month's wild journey of outpatient appointments, ER visits, infections, unidentified excruciating pain episodes, fevers, DME orders, IVs, catheters, blood draws, ultrasounds, x-rays, prescription refills, side effect management and even a vacation snuck in there somehow, you'll get a sneak peak into the constant barrage of medical management for a child with complex needs.
As Emily shares the sometimes overwhelming amount of issues that arise in Charlotte's care, she coaches listeners on how to find the joy in the midst of the chaos.
In this episode you'll learn how to focus on a mindset that allows for reality and emotion, while also holding onto the positive aspects of the situation. Many listeners will relate to Emily's 'month in the life' because your life looks very similar.
If you're looking for relatability and some help with your mindset about your life of pediatric medical complexities, this episode is for you!
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
On today’s episode, Ashlyn takes the reins while Emily navigates 12 big appointments for Charlotte crammed into 4 days. While Emily is greatly missed, this episode was so much fun to record with our 3 guests, DMI Experts & owners of Beelievability: Allie Watkins, OD OTR and Maggie Pisano, PT, DPT, along with their trusty therapy assistant, yellow lab Thistle.
The dynamic between Allie & Maggie is full of so much positive energy and passion, you can’t help but instantly be drawn to them and love their hearts for children with medical complexities.
The main goal is to introduce you to the groundbreaking therapy technique, Dynamic Movement Intervention (DMI). DMI is disrupting outdated views on therapy and the belief system that children will only achieve as much as their diagnosis says is possible.
Charlotte’s Hope Foundation and BeelievAbility share the belief that it should be up to the child to tell us what they can do and not let others such as geneticists, doctors, even other families navigating the same diagnosis, place limitations on them. DMI is all about embracing that thought process and supporting each child while challenging them to reach their highest potential. As Allie and Maggie say, “The first step is Beelieving.”
Allie & Maggie go on to explain the history of DMI and the core principles that make it so different from traditional occupational and physical therapy. They describe what an intensive session entails and why they often lead to many breakthroughs at a faster pace than traditional therapy. You will hear the helpful ways they guide parents to accept and embrace appropriate goals that are the best thing for their child at that time and how to celebrate every small win like they won the lottery.
With DMI being so new to the therapy field, many families travel across state lines seeking Allie and Maggie’s expertise. You can also view the resources below to learn how to find a certified DMI practitioner in your state. While DMI intensives are not yet covered by insurance, there are opportunities for grants that can be found by searching the web.
If you haven’t hit play yet, don’t wait another second – you are going to love this episode and walk away feeling invigorated and full of hope for the future of complex medical care for our children! Please help us share this podcast with as many people as possible so we can spread the hope.
BeelievAbility is an outpatient pediatric clinic founded by co-owners, Allie (Occupational Therapist) and Maggie (Physical Therapist). We offer intensive therapy utilizing dynamic movement intervention (DMI) as a main treatment tool. Our mission is to greatly improve a child’s quality of life and empower families in a safe and caring environment. Our goal is to never give up on a child’s potential and to help guide them to reaching their greatest abilities. The first step is Beelieving.
Socials: @beelievability instagram/facebook/tik tok
website: www.beelievability.com
The foundation we are
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Have you found yourself in the grasp of complete overwhelm & despair at least once (or maybe hundreds) since receiving the shock of your child's medical challenge(s)? Does it feel impossible to find joy and acceptance in the midst of chaos and heartbreak? Join us, as we candidly share our personal journeys to acceptance, full of ups and downs, and the many surprising gifts we never could have imagined. Personal experiences, reflections, and lessons learned are laid bare, offering insights that are not only enlightening but also inspiring.
Our discussion touches on the importance of acceptance, advocacy, balancing expectations, and how adapting to new roles and realities can be REALLY hard . Hear our stories of how we have come to embrace acceptance, redefining norms, and the power of letting go of perfection. Our hope is to help you understand that acceptance is not just about coping, but it's about transforming our perspectives and growing in the process. We share how the beauty of acceptance has allowed us to understand our children's needs better and become more assertive in medical situations.
Lastly, we explore the freedom of embracing imperfection and letting our children explore life. Balancing parental support and a child's independence is crucial, and we talk about how acceptance plays a significant role in this. We underscore the importance of being kind to ourselves and having a strong support network. On this journey, celebrating our children's strengths and seeking support when needed becomes an important aspect of acceptance. So, join us on this enlightening journey of acceptance, transformation, and finding joy even in the most challenging situations.
Additional resources:
For more information on acceptance, we recommend looking into Nobody’s Perfect: Living and Growing with Children Who Have Special Needs by author, Dr. Nancy Miller.
Parent to Parent USA: Our mission is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.
https://www.p2pusa.org/
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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Join hosts, Ashlyn & Emily, in an earnest conversation about the comparison trap that we all fall in and out of on a regular basis and learn why this is not something to feel shame about or make ourselves "wrong" for doing. Before diving into the episode topic, (fast forward to minute 26:50 if you wish to go straight to the comparison conversation), they spend time sharing updates on their family lives, everything from major life realizations, the power of mantras, starting homeschooling, and preparing for a full week of doctor appointments with numerous specialists. In addition, you will hear some exciting news for Charlotte's Hope Foundation:
- The first foundation newsletter will be shared out in the next couple weeks, providing an overview of the wins and progress the foundation has made and overview of next steps. Email contact@CharlottesHopeFoundation.org with your name, email, and address if you would like to receive a copy of the newsletter or subscribe to the podcast on our website to be added to our email list.
- Mark your calendar for the inaugural Celebration of Hope event, to be held on May 4th, 2024 in Wooster, OH. More details to come over the coming months!
- Since the release of episode 21: Charlotte Has a Diagnosis, numerous families have reached out to connect with the foundation and Emily over their shared diagnosis of Hardikar Syndrome for their child.
The Comparison TrapEmily & Ashlyn have made a point to address the comparison trap from the beginning of their friendship and have learned a lot from facing the sting of the thoughts and feelings that accompany comparing your child's medical journey to another's, be it someone with only healthy children, someone with a less complex diagnosis, or even someone whose child has it "far worse" than your child.
The reality is that comparison is inevitable, it's part of how we process our life experiences and it's completely natural. However, as a parent or caregiver of a child with medical needs, comparison can easily turn into a downhill slide straight to shame, anger, resentment and/or self-deprecation. Through out this conversation, Ashlyn & Emily repeatedly come back to the fact that it's not the thought or feeling that you experience that matters most, but what you do with those thoughts and feelings that truly determine how comparison will affect you.
In this episode, you will hear multiple examples of comparison that both moms have experienced and how they have learned to handle those moments over time. Learning to acknowledge the thoughts and emotions without punishing ourselves is the ultimate goal and you will hear different ways to work on this skill throughout the conversation. By the end of the episode, you will walk away with the knowledge that you are not alone in your thoughts of comparison, and you will have at least a couple new tools you can use the next time you find yourself getting stuck in the trap of comparison.
Additional ShowGet 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
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too.
How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls "brutally practical tools" and resources to simplify and support the caregiver's life.
In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include:
- Stages of adaptation
- Parent to Parent USA
- Parent Training and Information Centers,
- Project Sunshine,
- Hear Your Song
- Personal Kanban
- She is Charlotte
This list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs.
Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There's immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Ashlyn introduces her own personal support systems, her trusted therapist, who is rose loving, and an aspiring stick figure artist (not really, but she could be!), Chelsea Cassel. We unmask the often overlooked truth—caregivers and parents are also victims of trauma, even when they are not the direct recipients of a traumatic event. In this discussion we navigate the murky landscapes of trauma, grief, and guilt, shedding light on the varying reactions to trauma across genders. Our exploration of pain triggers and the necessary practice of processing traumatic experiences opens the doorway to how we can begin the healing process.
Between the two of us, we dig deep into the realm of emotional processing. Chelsea, with her expertise as a Marriage and Family Therapist, guides us through the healing potential of journaling, scheduling time to process, and being compassionate towards ourselves. We contemplate how trauma can take the reins of our lives, seeping into our everyday routines, and how essential it is to take back control. Towards the end of the episode, we touch on the liberating power of acknowledging our traumas and how to move forward when our bodies harbor memories that our minds might not recall.
We stressed the importance of not minimizing our experiences and admire the resilience that emerges from this process. We explore the power of self-dialogue and encourage listeners not to shy away from seeking professional help. Chelsea and I conclude by emphasizing the healing force of support and connection, advocating for self-care and self-expression. This emotional odyssey, laden with insights and revelations, is an invitation to us all. Come, join us, as we traverse this uncharted terrain together so we can take the necessary steps to free us from the strongholds of "trauma brain" and be the best advocates for our children while reclaiming our own lives.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Do you ever feel like you're still searching for answers when it comes to raising a child with medical complexities? You're not alone. Join us as we connect with Lily Brown from Parent to Parent USA, a parent herself, who shares her personal journey and the transformative stages of adaptation that often come with this unique role.
We kick things off by diving into the initial stage of 'searching', a phase that involves action, purpose, and the quest for control. Lily shares her insights on transitioning into the 'settling in' stage, a calm after the storm where new routines emerge and a different sense of control is established. We reflect on the vital role of introducing children into conversations about their medical care and its empowering effect. We also discuss the importance of understanding each stage, how it can offer resounding support, and provide a sense of shared experience that can fast-track bonding between parents on a similar journey.
The journey doesn't end there, though. We venture into the relentless 'searching' phase, a time where the hunger for answers can potentially tip the scale of balance. To navigate this, we offer strategies and reflect on the beauty of acceptance; life may be different than planned, but it can still be so wonderful. We emphasize the importance of recognizing our children's capabilities, fostering their independence, and celebrating small victories in parenting. Lastly, we signpost you towards Parent to Parent USA, a resourceful compass for parents navigating similar terrains.
So, tune in, gain insights, and perhaps discover a new perspective on your journey.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
What if you could navigate the emotional landscape of raising a medically complex child without being consumed by guilt? Join us as we journey through such a life, reflecting on our victories, challenges and the invaluable lessons we've learned along the way. We talk about maintaining confidence amidst adversity, finding the right feeding methods, preventing urinary tract infections, and dealing with hearing and vision issues - a testament to the resilience all parents must embody.
From managing ostomy bags to celebrating our children's milestones, we explore our lives with raw honesty. We shed light on the crucial role of medical professionals and the importance of their advice in our decision-making process. We reveal the strides being made by the Empowered by Hope Foundation, discussing the milestones and updates from our personal lives - always celebrating the power of hope and resilience.
We dive into a candid discussion about the role of guilt in our lives as parents of medically complex children. We share our coping mechanisms, how we let go of self-blame and how we let research guide our decisions. We emphasize the need to confront guilt constructively, maintaining perspective, setting an example for our children and building resilience. Join us on this journey, find hope in our shared experiences, and be reminded that you are capable, equipped, and not alone.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Have you ever wondered how would it feel to juggle parenting six children while managing the challenges of childhood illnesses, with not one, but two kids? We bring you an intimate conversation with Laurie Szabo, a French teacher, and an avid globetrotter, who sheds light on her journey as a mother to six kids. The way Laurie and her husband navigated the challenges of raising two children with medical conditions is nothing short of inspiring. Her insights on transitioning advocacy responsibilities to your children as they become adults are invaluable.
We get a taste of Laurie's exciting traveling adventures across 37 countries that are filled with rich experiences. This includes snorkeling with whale sharks in the Philippines, trekking two miles into the jungle to explore the ATM Cave in Guatemala, and an amusing meal in Kuala Lumpur. Lori also gives us a peek into their family's Disney tradition and encourages us to seize opportunities for fun, reminding us that it is okay to take a break from everyday responsibilities.
We wrap up the conversation with Laurie's valuable tips on parenting and prioritizing responsibilities, shedding light on the importance of instilling leadership roles in older children, the significance of family time and activities, and how parents can support their children with medical conditions. Laurie also emphasizes the importance of self-care for parents, which can take many forms, from taking a break to engaging in activities that bring joy. Buckle up for this episode, filled with hope, unity, and invaluable parenting wisdom.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Imagine navigating through a labyrinth of complex medical needs for your child, coordinating multiple specialists, and grappling with the emotional toll of balancing her care with your own work. Emily bravely shares her personal journey of exactly this rollercoaster ride in this touching episode. Join us as we venture through the various stages of pediatric surgery from Emily and Ashlyn's perspective; from the very beginning of symptoms discovery, to research, to surgery preparation, and finally the surgery itself. Each stage unravels fresh emotions and challenges. The post-surgery recovery phase is a journey in itself, involving intense 24-7 care and the struggle of finding new normalcy.
The 10 stages:
- Symptoms appear - you know something is wrong but don’t know what; seek out specialist for answers
- Discovery - need for surgery is determined; denial is often involved
- Research - research all possible options to try to avoid surgery or make sure it’s the right surgery
- Surgery Prep - you come to the conclusion this is the right next step and now you get very busy with all the details to prepare. Anxiety and jitters propel you into managing each and every detail - as if you are nesting for a newborn baby
- Surgery Day - game time. You’ve lost sleep, been anxious, worried, researched, cried. Now it’s game time and you’re just ready for it all to be over. You are ready to enter the battle that is postop recovery- as ready as you can be.
- Post-op Recovery - all hands on deck to help recovery go as smooth as possible - it’s like having a newborn, everything for them comes first, hardly any sleep but unfortunately the main difference is there is pain to contend with. You're all exhausted and out of sorts.
- The Black Hole: the term we have fondly dubbed for the month following major pediatric surgery when its pain medication management, side effect management, medical equipment, wound care, infection watch, follow up appointments, etc.
- Light at the end of the tunnel - a month from surgery when you finally see your kid doing something they couldn’t do before surgery or being joyful, a kid again. You can finally take a deep breath for the first time since learning surgery was coming.
- Clean up of emotional fallout - the month 5 weeks after surgery and on. You and your significant other and your family pick up the pieces that all fell to the wayside while you were surviving. Siblings' emotions spill over, emotional processing of the trauma.
- Life after surgery - by month 3, life has a new normal and things are looking bright again or manageable - you’ve climbed out of the black hole. Leaving it forever changed.
In the midst of it all, Emily finds time to share her reflections on the importance of gratitude and appreciation, even during challenging times, and how important it is to celebrate small victories along the way. Listen in as Emily opens up about the emotional weight of her journey, and the extraordinary resilience it takes to normalize medical complexities and appreciate the small moments of life, even after a difficult experience. Be sure to subscribe, reach out, and share our podcast with those who might find comfort and solidarity in these stories.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Advocating for our children can be a challenge, especially when we're trying to balance strength and vulnerability. Ashley Milbourne and I share our personal experiences with navigating advocacy, expectations, and vulnerability while striving to move forward in our advocacy journeys. We also delve into the topic of trusting others with our children's care, and the importance of recognizing when outside help is needed.
Parenting can be difficult, especially when dealing with a health condition or trauma. In this episode, Ashley and I explore the significance of having a support system, finding a safe person for support, and the power of connection and solidarity when taking our children to medical appointments.
Join us as we celebrate the resilience it takes to keep pushing forward on this journey of hope.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Preparing for your child's surgery can be an overwhelming experience, but there's hope and strength to be found in each other's stories. Join us, Emily and Ashlyn, as we share personal experiences and practical tips on navigating this challenging journey, from mental and emotional preparations to taking care of ourselves and our children during the process. Discover how we've celebrated post-surgery victories and the milestones our children have achieved in their recovery.
Listen in as we explore the invaluable role of child life specialists, the importance of pain management plans, and the support and wisdom to be found in connecting with other families facing similar challenges. We'll also discuss how to approach discussions with your partner and prepare for the unexpected, as well as stocking up on essentials and addressing the surgery with your child.
Throughout this episode, we'll emphasize the significance of living in the present and focusing on each step of the journey. By the end of our conversation, you'll gain insight into the practical aspects of surgery preparation and post-operative recovery, the emotional and mental aspects of facing this challenging time, and the incredible support that can be found in connecting with others who truly understand.
We hope our experiences and advice will bring comfort and encouragement to you and your family as you prepare for and navigate your child's surgery and recovery.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Lily Brown has experienced firsthand the magic in the match of parent to parent support after her daughter was diagnosed with a rare genetic condition at age 3. As Co-Executive Director for Parent to Parent USA, she is dedicated to strengthening the Parent to Parent community so that no parent feels alone, ever. She leads the organization in the areas of development, program evaluation, volunteer engagement, and fiscal management. She draws on her entrepreneurial background to scale operations using a combination of talent and technology.
In today's episode, Lily shares her own personal story of hope and how she and her husband, David, worked together to advocate for their amazing daughter, Suzie, who received an official diagnosis of Cohen Syndrome at the age of 3. They even went so far as to relocate from Texas to Pennsylvania to give Suzie access to what they felt were the best resources available to meet her needs and offer the best quality of life.
Emily, Ashlyn and Lily all connect over their shared story of having daughters with rare medical complexities and how connecting with other families for support has helped heal wounds, open unexpected doors and led to amazing friendships and discovering untapped strength within.
We want to hear from you if anything from this episode connected with your or if you would like to share your story of advocacy! Contact us at contact@charlotteshopefoundation.org or send us a message through our social media accounts.
To be connected with your local Parent to Parent chapter, visit: https://www.p2pusa.org/parents/
You can follow Parent to Parent USA at:
Facebook: https://www.facebook.com/p2pusa
Instagram: https://www.instagram.com/p2pusa/
Cohen Syndrome Association: http://www.cohensyndrome.org/
Cohen Syndrome Research Foundation: https://csrfoundation.org/
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
With more than 30 years of experience, having cared for thousands of patients, and with a heart made of pure gold, former neonatal nurse Amy Bartholomew joins Emily K. Whiting, sharing tips for how to advocate for your newborn baby in a Neonatal Intensive Care Unit (NICU). Amy was Charlotte’s primary nurse when she spent those first few rocky months of her life in a level IV unit, designed for babies needing the highest level of acute care.
We are confident as you listen to this episode you will feel more equipped to handle life in the NICU, AND you’ll fall in love with “Miss Amy,” “Aunt Amy” and “Nurse Amy,” as Emily fondly calls her all three.
In this episode you will:
- Learn what many acronyms and medical jargon used in the NICU mean, such as CBC, TPN, NPO and so much more. She provides “translation to the NICU language,”
- Gain confidence that no question is silly or stupid,
- Voice your opinions to medical staff and learn specific avenues to do so,
- Learn what NICUitis is and how to avoid it,
- And so much more.
If you or anyone you know is about to have their baby in the NICU, or is currently in the NICU, you don’t want to miss this episode.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
“I can’t do everything,” and “This is going to end.” These are the two key insights co-host Ashlyn Thompson shares with us about her recent surgery recovery experience with her daughter Emery, who was born with a congenital anomaly called bladder exstrophy.
Now back on United States soil, Ashlyn reflects on the challenges of the last six weeks caring for her two-year-old after a life-changing surgery in England. Between Ashlyn’s post-op experiences with Emery and co-host Emily Whiting’s with Charlotte, the two have navigated 18 pediatric surgeries. They discuss “the black hole” that is pediatric post-op and how to survive it.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
After six years of living in what co-host Emily Whiting calls the no man’s land of rare undiagnosed disease, her daughter Charlotte has finally received an overarching diagnosis that explains her medical anomalies.
In today’s episode, Emily reveals that diagnosis and the wild journey that led to the genetic anomaly discovery. She openly discusses the challenges of living with an ultra-rare undiagnosed disease, the pros and cons of having a diagnosis, and what it might mean for Charlotte’s future.
Emily begins the discussion of how Charlotte has no ‘medical home’ where her care is proactively managed, and the care gaps despite having more than 20 specialists involved.
Join Emily to dream about how Charlotte’s journey can positively impact and improve the world of pediatric complex care, of living with a rare and undiagnosed disease, and, of how Charlotte’s Hope Foundation could one day unite the nine current families known to have the same syndrome as Charlotte (and maybe even more as they continue to be discovered).
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Guest Ashley Milbourne joins host Ashlyn to share her story of first receiving the news of her own health challenges and those of her unborn baby at the routine anatomy scan nearly halfway through her pregnancy. Ashley shares the turbulent road for her and her family after that fateful ultrasound, all while navigating the added challenges of Covid-19.
In this episode you learn how one mom gained her advocacy voice as she was hospitalized and on bed rest, separated from her family due to Covid-19 hospital visitor restrictions, navigated the wide array of emotions as she wrestled with the reality that her own life was at risk, grappled with diagnoses for her unborn baby that ended up being inaccurate, and how she now embraces the challenges, joys and triumphs of raising her resilient sweet 2.5-year-old daughter with Bladder Exstrophy.
You don’t want to miss this episode. You will walk away with such encouragement, inspired by incredible grace and empowered with the hope that you too can advocate for your child in phenomenal ways.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Ashlyn Thompson surfaces from the “black hole” that is pediatric post-op recovery to share an update on her daughter, Emery.
She shares:
- How Emery’s surgery went,
- What it’s like having pediatric surgery in a different country (medical tourism),
- The worries, thoughts, anxieties, triumphs and setbacks that are post-op,
- The ongoing struggle with pain control,
- The cry of a parent’s heart as she watches her baby writhe in pain,
- And so much more.
In this episode you will catch a glimpse of the reality of pediatric surgery recovery. If you are preparing for your own child’s upcoming procedure, this episode will help arm you with things to consider and questions to ask your surgeon before the big day.
If you are a medical professional, this show will give you tips for offering compassionate care that invites the parent to be part of the recovery team and helps diffuse the high emotions often felt by patients, families and parents involved in post-op care.
And, as a little bonus, we discuss a pre-op and post-op checklist to help parents and caregivers navigate these challenging times (which is soon to come!).
In the end Ashlyn reminds us, this pain will not last forever. We cling to this knowledge and hope as we trudge our way through the darkness of post-op recovery.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
“You are worthy of happiness and joy in parenthood and this happening to you isn’t your fault,” today’s guest Elaine Bishop reminds us. She adds, “There is still so much joy to be had in raising these little people, even though it’s not going to look like what you thought it would.”
These are just some of the nuggets of wisdom Elaine shares with us in this incredible episode on advocacy. Elaine is a certified nurse midwife and Emily Whiting’s former Maternal Fetal Medicine Care Coordinator when she was pregnant with Charlotte.
Elaine shares words of deep compassion and invaluable insight for those facing prenatal diagnoses and she also gives concrete tips for advocating for your unborn child. She says, “Advocacy can sometimes feel synonymous with conflict, but it’s not necessarily,” and she provides basic tips for beginning your advocacy journey.
You don’t want to miss this episode!
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Ashlyn and Emery take us with them as they fly from Indiana, United States of America, to London, United Kingdom, for a life-changing procedure.
They are the first American patients to undergo this surgery which is not (yet) offered in the United States. In this episode you will learn the background story of what led Ashlyn and her family to decide to “cross the pond” for their daughter’s medical care.
We discuss the hardships, fears, excitement and worries that go into making such monumental decisions for our kids. We talk about the common barriers to “medical tourism" which the Thompson family face. We launch our trip alongside Ashlyn and Emery as we support them and cheer them on in their journey toward healing.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Fellow mama of a beautiful child with medical complexities, Haleigh Dean shares her incredible insights to two questions we posed:
- Given what you’ve gone through with your child, what is one thing you wish you’d known at the beginning of your medical journey that you want to share with listeners now?
- What is an unexpected blessing or positive that’s come from this journey that you could not have imagined at the beginning of it?
Haleigh reminds us, “it’s okay to grieve what you thought was going to be.” She encourages us, “don’t be afraid to advocate for your child,” adding, “if you feel something is not right, it’s okay to tell them (the medical professionals).” And, she gives us hope that from meeting other parents and caregivers raising children with medical complexities, she has gained confidence in her parenting/advocacy role and you can too.
You don’t want to miss her words of wisdom!
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Fellow mama of a beautiful child with medical complexities, Ashley Milbourne shares her incredible insights to two questions we posed:
- Given what you’ve gone through with your child, what is one thing you wish you’d known at the beginning of your medical journey that you want to share with listeners now?
- What is an unexpected blessing or positive that’s come from this journey that you could not have imagined at the beginning of it?
She assures us, “we don’t have to have a medical degree to advocate for our babies”. She encourages us, “I can do this and you can too.” And, she reminds us, “kids are resilient!”
This is the first of several episodes highlighting guest parents and caregiver’s answers to these questions. You don’t want to miss her invaluable story of hope!
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
"To the ends of the earth," says Emery's warrior mama, Ashlyn Thompson. Thankfully she doesn't have to go that far, but she is preparing to cross the pond to seek her daughter's treatment in London, United Kingdom. Ashlyn opens up to us about this looming trip and her daughter's procedure which is not yet offered in the United States.
In this episode she shares about the challenges and hurdles she's navigated as she ultimately found and chose this surgical option. She also shines a light on the lack of insurance coverage for out-of-country procedures that are non-emergent.
In this episode you will:
- get a front row seat in Ashlyn and Emery's journey to London, U.K.,
- learn how advocacy for our kids often means having the confidence to ask a whole lot of questions,
- gain tips for seeking second opinions like a champ (Ashlyn is the pro!),
- hear Ashlyn's promise to learn more about insurance for out-of-country care,
- learn how you can support Emery and Ashlyn's family as they prepare for a surgery in a different country.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
You are your child's voice and the primary individual who knows your child best. Therefore, you have the honor and privilege, and also incredibly challenging and sometimes overwhelming task, to be your child's advocate for his/her medical needs.
- What does pediatric patient advocacy mean?
- How do you step into that role when you have no medical background?
- What are basic ways to advocate for your child?
Find the answers to these questions and more as Emily and Ashlyn launch the Empowered by Hope Advocacy Series.
In this first Series episode of many to come, you'll learn some basics like how to build your child's medical team with confidence and what questions to ask (and a reminder to ask ALL your questions, even the ones you think you shouldn't). Ultimately, we will remind you that you are already your child's best advocate simply because you love him/her. The first and primary job of a pediatric patient advocate (aka: mom, dad, caregiver) is to show up for your child with unconditional love.
You've got this, and we are here to bolster you in this role of advocacy.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
After five years of struggling with chronic and acute pain with her daughter, Emily shares her breakthrough moment that happened this week, finally discovering the answers their family has sought for addressing Charlotte's pain. Through trial and error, and many frustrations and setbacks, Emily is learning first-hand what it means to be your child's advocate, and is sharing her insights. Tune in to this episode to celebrate the victories of advocacy and gain tools to navigate the world of pediatric medical complexities.
In this episode you'll learn more of the backstory of Charlotte's medical challenges, Emily's challenges and heartaches as she tries to care for her daughter while often feeling helpless to alleviate her daughters' pain, and the amazing progress that's been made toward healing in the last few months. As you listen, you will:
- Learn what questions to ask to find the right specialist, sub-specialist, clinic or team who can best help your child.
- Gain the confidence to keep seeking answers, keep questioning, keep pushing until your child gets the care they need.
- Learn how humility and confidence together play a key role in your approach as an advocate.
- See how our innate desire to seek the approval and validation of medical professionals can also be limiting, and learn how we can reorient our need for validation in a constructive manner.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Join Emily & Ashlyn as they sit down to talk about the scary reality of medical bills, navigating insurance and where to get help. You’ll hear the fears they each faced, the lessons learned, and gain helpful recommendations on how best to approach the management of medical bills.
While Emily and Ashlyn don’t work in insurance, nor claim to be experts, Emily’s family has consistently met their deductible by January 2nd every year since Charlotte was born and Ashlyn is actively taking on her insurance provider to get coverage for Emery’s upcoming surgery in London - basically, they have accumulated a lot of experience.
Listen to this episode to learn valuable lessons about insurance and finding support that they both wish they had known at the beginning of their journeys.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
It all started with a text between two long-distance friends and quickly evolved into the formation of Charlotte’s Hope Foundation, Inc. In this episode you’ll hear how the passion of two moms turned into the creation of this 501(c)(3) that’s dedicated to supporting, encouraging and educating parents and caregivers of children with complex medical needs. You’ll learn the immediate and long-term goals of Charlotte’s Hope Foundation and how Emily and Ashlyn plan to empower parents and caregivers as their child’s capable advocates.
Join us in this amazing cause by visiting CharlottesHopeFoundation.org and following us on Instagram and Facebook. You can also join our Facebook Charlotte’s Hope Foundation - Empowered by Hope Podcast group for community among other parents and caregivers raising their children with complex medical needs.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
When your child suffers with illness, treatment plans and pain from their complex medical needs, it’s natural to wonder why God would allow this. Whether consciously or not, and even whether Christian or not, many parents and caregivers find themselves wondering this question—why does God allow my child to suffer. There is nothing like childhood illness that brings us to the end of our own capacity and makes us turn to the Infinite.
In this episode, Emily and Ashlyn vulnerably share their own struggles with this question, including the full range of emotions from guilt to anger, resentment to acceptance. While neither claim to have the answers, they shed light on what to do with this question when it comes to mind and help you focus on this one important truth. If you’re looking for consolation, encouragement and direction with what to do when you wonder this question, this episode is for you!
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Get the behind-the-scenes details about the new book She is Charlotte: A mother’s physical, emotional, and spiritual journey with her child with medical complexities. In this episode, founding partner Ashlyn Thompson interviews author Emily K. Whiting, asking questions like:
- Who is this book written for,
- What’s the premise of the book,
- What was Emily’s favorite chapter to write (sneak peak: Emily even reads part of the chapter),
- How did Emily manage to write a book in a year all while raising a child with medical complexities and having three children in diapers.
To order your copy, visit CharlottesHopeFoundation.org or go directly to Amazon and search for She is Charlotte. And, if you’ve already read the book, thank you so much! Please be sure to leave a review!
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
One of the first things we are tempted to do when we learn our child is not healthy is to search for answers on Google. While the internet can be a great tool for researching diagnoses and medical challenges, it also can be dangerous and lead you to a whole lot more worry and distress than necessary.
In this episode Emily and Ashlyn teach you the many ways to research your child’s medical challenges, including your medical team, seeking second opinions, patient navigators and social workers, parent support groups, and finally, the internet. We explore tips for using the internet safely as a helpful tool and not as your first source of information.
The goal is ultimately for all your research to help you best advocate for your child’s medical needs, not to deplete your energy or cause added angst.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Many people say "let me know how I can help" or "call me if you need anything." They genuinely want to support you through your family's challenging situation but aren't quite sure how. And, let's face it, oftentimes we on the receiving end of the offer for help often don't know what support we need either.
In this episode Emily and Ashlyn break down why accepting help is both incredibly hard and humbling, and simultaneously a critical aspect to not only surviving but also maintaining hope as we care for our children with medical complexities. They make it very clear—when someone asks if they can help, the answer is always YES!
Emily and Ashlyn then list specific ways people can best help parents and caregivers of children with medical complexities.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Raising a child with medical complexities puts immense strain on relationships. Partners experience their child's diagnosis and the subsequent medical interventions differently. In this episode Daniel Whiting joins Emily Whiting to openly discuss how he as the husband and father processes things differently than she, and how having grace with each other in these unimaginably trying times can make all the difference.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
In the myriad of medical challenges, diagnoses and complexities, it's easy to lose sight of the unique, beautiful and cherished life that is your child. In this episode Ashlyn and Emily explore practical ways to remind you and your medical care team of the gift your child is. Parents and caregivers of course know their child is a treasured individual and this episode provides the loving reminder as balm to hurting parent hearts.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Initially sharing the news of your child's diagnosis with family and friends, and subsequently keeping your circle of supporters informed as things evolve, can be an overwhelming and emotionally taxing job. Yet, building your support system to sustain you through these challenging times is key, so how do you do it?
In this episode we discuss practical and simple things to consider when sharing news about your child's diagnosis and their ongoing care.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Feelings of inadequacy, inability and overwhelm can crowd our minds and instill fear in us as parents and caregivers as we think about all our child may need for his/her medical complexities. You wonder, can I really do this?
In this episode, we address some of the most common fears that can paralyze you and learn basic tips to overcome these feelings of inadequacy. Remember, you are brave. You are strong. You are capable.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
Many parents experience overwhelming guilt when they receive news of a medical diagnosis for their child.
Tune into this episode to learn how to address the emotions hiding beneath the guilt, and how to move forward as the strong capable advocate you want to be for your son or daughter.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming.
Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope.
To get more personal support, connect with us directly at CharlottesHopeFoundation.org.