Empowered by Hope

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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.

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

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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 

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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.

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 

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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.

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!

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.

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!

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 [email protected] 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/

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!

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. 

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!

“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. 

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!

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).

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!

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. 

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!

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. 

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