Joy In The Journey

Joy In The Journey is a podcast dedicated to supporting families with critically ill kids. Life brings unexpected circumstances, but choosing joy makes all the difference. Your host, Jamie Freedlund, knows this better than anyone. Her world changed when her daughter, Mattea Joy, was born with several severe medical complications. Jamie and her husband were given a very small chance that Mattea would survive at birth, but were able to share nine and a half wonderful months with her that they didn't expect to have. This experience led to a deep level of gratitude, shifting Jamie’s life as a result, and allowing her to discover joy in every day—even the tough ones. Most of Mattea’s life was spent in the hospital. It was there that Jamie came to understand what it means to be a parent of a critically ill child and the challenges that go with it. Through this podcast, she hopes to help other families going through similar struggles. Join us on a journey of connection and learning through beautiful stories, expert content, and finding more joy in the everyday!

082: Bringing Peace & Joy to Families with Pediatric Cancer with Jenna Kmitch 05/17/2024

081: Insights on Communicating Effectively With Your Medical Team with Henry Rosh & Megan Keeler 05/02/2024

081: Insights on Communicating Effectively With Your Medical Team with Henry Rosh & Megan Keeler When you first enter the medical world as a caregiver, everyone around you hits the ground running. The nurses and doctors know exactly how to get started, and yet, you might be left feeling overwhelmed and powerless. This is what makes social workers so important: they support the family holistically, encourage communication, help bridge information gaps, and empower you to become an important member of your child’s medical team. My guests today, Henry Rosh and Megan Keeler, are both social workers at Lurie Children's Hospital of Chicago. Henry works with families who have extended admissions in the heart center, and Megan extensively prepares families for admissions and hospitalizations in the epilepsy center. They are the superheroes in a medical team, meeting families where they are and making their experience in the hospital remarkably better. In our conversation, they’re sharing their best advice on communicating with your medical team, building relationships with nurses, and participating in your child’s care so that you can feel more comfortable and better informed on the next steps in your journey. Key Takeaways with Henry Rosh & Megan Keeler The impact of social workers on medical journeys How they make hospitals less intimidating for families What is Psychosocial Support? Encouraging communication with medical providers The role of families in the medical team What to expect from bedside nurses, providers, & physicians Getting involved in your child’s care both in-person & remotely Having confidence to challenge & question medical plans Building a two-way relationship with nurses Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/31077063

080: Discovering Unexpected Gifts in Times of Grief with Sara Ward 03/26/2024

080: Discovering Unexpected Gifts in Times of Grief with Sara Ward After losing someone close to us we are usually told about the five stages of grief and how each of them will show up. But grief often shows up differently for everyone, skipping and cycling through stages in unique ways. My guest today is Sara Ward, and she knows a thing or two about grieving. After unexpectedly losing her father to a heart problem as a teenager, her 9-month-old adopted son was diagnosed with a rare and terminal disease and given a very short time to live. Instead of choosing to focus only on the hardships of grief, Sara committed to looking for unexpected gifts in her journey. Since then, she’s written a book titled, Made for Hope: Discovering Unexpected Gifts in Brokenness, which is aimed at helping others navigate their grief journey. She's sharing her story on how community, faith, hope, and gratitude got her through some of the hardest challenges of life. This episode is perfect for anyone who’s in the thick of their grief journey or knows someone who is to feel less alone in this very difficult season of life. Key Takeaways with Sara Ward Processing grief as a child or teenager Dealing with a sudden and unexpected loss How the stages of grief are unique for everyone The anticipatory grief that comes with terminal illnesses Seeking help through grief groups The importance of rest for caregivers Leaning on faith & community When parents have different coping mechanisms Feeling guilt after the loss of a child Focusing on the blessings in the midst of pain Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/30489838

079: The Glimpses of Joy You’ll Find When You Look For Them with Gina Prosch 03/08/2024

078: Offering Hope, Dignity and Holistic Care in Kenyan Hospice with Juli Boit 02/06/2024

078: Offering Hope, Dignity and Holistic Care in Kenyan Hospice with Juli Boit Juli Boit is no stranger to helping those in need. She’s an author, family nurse practitioner, and international non-profit director of , dedicated to providing palliative care services to adults and children in western Kenya. After going through an adoption journey with her son Ryan, whose parents had recently passed, and consequently adopting his siblings, she found herself needing some help of her own when two of her kids required transplants far from their Kenyan home. These transformative experiences made Juli see her work through a different lens: that joy can be found in both giving and receiving and that without the pain, we cannot experience joy. Today, Juli is sharing her experience in the hopes of making someone else’s journey of navigating children’s treatments, ICU admissions, and surgeries feel a little more manageable. Key Takeaways with Juli Boit Navigating an international adoption process How motherhood changes your perspective on helping others The importance of community & the feeling of belonging Creating community in a new phase of life Asking for help when you feel vulnerable or scared Guiding others through shared experience Making room for grief to experience joy Practices to help you feel present and grounded Navigating a transplant and ICU journey How traumatic experiences affect your faith Welcoming people who feel like they’ve never been welcome anywhere Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/29762143

077: Trauma & Anxiety: Going From “Why Me?” to “What Now?” with Sarah Falk 01/23/2024

077: Trauma & Anxiety: Going From “Why Me?” to “What Now?” with Sarah Falk Sarah Falk has received more than a few extremely scary cancer diagnoses in her life: the first one at only 17 years old (bone cancer) and the second at 40 years old (breast cancer). Naturally, she found herself asking, “Why Me”? But as you’ll hear, a better question to ask yourself is, “What now?” Sarah is a mom to 4 boys, a mental health therapist, an author, and 4-time cancer survivor. She has taken her traumatic experiences and used them as a source of deep understanding of the challenges these diagnoses come with. Having specialized in anxiety, panic, and trauma, her work is particularly focused on a treatment called Accelerated Resolution Therapy. Today, Sarah shares her best tips on redefining life post-diagnosis, dealing with grief, healing your mind, and connecting with others. You’ll hear how she helps those facing similar challenges embrace their situation and find joy by choosing to see the miracles around us. Key Takeaways with Sarah Falk The impact of caring and involved social workers Dealing with a difficult diagnosis as a teenager Redefining life post-diagnosis (adjusting to difficult life changes) Getting involved with the hospital community as an in-patient How to support someone who is in the hospital Shifting your mentality from “Why me?” to “What now?” Healing anxiety through mind, body, and spirit practices Sharing your journey to support and connect with others Explaining your diagnosis to your children Learning to pause when possible (breathing & journaling) Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/29584508

076: Blooming Littles: Helping Parents and Caregivers Manage NICU Journeys with Katie Ross 01/09/2024

076: Blooming Littles: Helping Parents and Caregivers Manage NICU Journeys with Katie Ross As today’s guest will tell you, “You become a NICU parent in the blink of an eye.” Katie Ross is the creator of and she’s doing incredible work in the NICU space as a certified neonatal occupational therapist. As a mom of a full-term NICU baby herself, she’s made it her mission to inform and empower parents by teaching them about the little things they can do that make a difference in their baby’s development and truly transform their NICU experience. By combining her doctorate with additional certifications, including neonatal massage and lactation support, her clinical experience at large children’s hospitals has given her a unique understanding of the challenges and needs of NICU babies. This episode is perfect for anyone who is currently in the NICU, has experienced the NICU, or knows someone else who’s on their own journey. Katie shares her best tips on participation (skin-to-skin, hand hugs, etc), managing trauma & pain responses, and setting healthy boundaries. Key Takeaways with Katie Ross Understanding the importance of occupational therapists Empowering parents in the NICU The power of touch: skin-to-skin, hand hugs, and more Creating positive moments within the NICU experience The coping and trauma responses of families How to feel confident after discharge and bringing your baby home Bedside questions that parents should ask providers Giving yourself grace in a difficult season of life Learning to protect your (and your family’s) peace Ways to support parents through acts of service Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/29300173

075: Exploring Growth Through Grief and Choosing Faith Everyday with Emily Ann Adams 12/12/2023

075: Exploring Growth Through Grief and Choosing Faith Everyday with Emily Ann Adams How are parents meant to believe that the loss of a child is all part of God’s plan? Grief is a difficult journey for everyone, but it can feel especially challenging when it’s accompanied by a feeling of losing yourself or your faith. My guest today, Emily Ann Adams, had this exact experience after the passing of one of her twin boys, Aidan. Faced with three little children under 5 to look after, including Aidan’s brother Alan who was born at 32 weeks, Emily made a courageous decision; to dive deep into her grief to understand it better. In the process, she helped dozens of other families navigate their own grief through her incredibly moving book: Is There No Other Way?: Exploring Growth Through Grief. This episode is vulnerable, raw, inspirational and serves as a reminder that our faith is something we can choose every day. Emily’s advice reminds us of the power of connecting with others while respecting that everyone experiences grief differently. Key Takeaways with Emily Ann Adams Grieving the loss of a baby during pregnancy Twin-to-Twin Transfusion Syndrome Navigating the loss of a child, especially a twin Losing your faith through the loss of a child Learning from the pain and choosing to believe in a reason The importance of respecting others and their choices Finding connection through shared experiences Establishing time limits to talk about grief Using journaling and writing as a healing tool How to rediscover hope while healing Change the lenses through which we view our experiences Finding gratitude in the lives we have Finding utility in pain and turning it into a tool Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/29011323

074: Finding Community and Letting Love In on a NICU Journey with Meg Helgeson 11/28/2023

074: Finding Community and Letting Love In on a NICU Journey with Meg Helgeson One of the only certainties about having children is uncertainty: we can’t find out beforehand how a pregnancy or birth experience will go, or who our children will grow up and become. Add in a premature birth, an illness diagnosis, and a NICU stay to the mix, and it can lead to overwhelming worry and anxiety. My guest today, Meg Helgeson, is certainly no stranger to this. Her twin girls Ellie and Leah, who are now healthy 12-year-old girls, had to be flown to the NICU at Comer’s Children Hospital at only 5 days old to receive a meningitis diagnosis. Looking back, Meg is now able to share her advice for parents going through similar situations: from the nerves of discovering you are having twins, to the heart-wrenching experience of caring for them in the NICU. She shares helpful tips on allowing others to be there for you, remembering to care for yourself, managing expectations, and dealing with overstimulation. If you’re a “recovering perfectionist” trying to balance that with the beautiful chaos of parenthood, then this episode has some goodies for you. Key Takeaways with Meg Helgeson The highs and lows of finding out you’re having twins Setting healthy boundaries throughout pregnancy Managing and grieving pregnancy & birth expectations The importance of accepting help from friends and loved ones Taking care of yourself through the NICU journey Accepting that it is normal not to know everything Avoiding comparison in the NICU Treating siblings (especially twins) as separate individuals How nursery nurses make the experience less daunting Celebrating non-traditional milestones to help find joy Dealing with overstimulation around small children Letting go of perfectionism Giving yourself “second chances” to get things right Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/28731238

073: Learning To Flex Your “Joy Muscle” with Bekah Bowman 11/14/2023

073: Learning To Flex Your “Joy Muscle” with Bekah Bowman When a parent learns that their child has been diagnosed with a serious illness or condition, it’s difficult not to be consumed with worst case scenarios. But as Bekah Bowman will tell you, you have two choices: either allow your past and future to steal joy from your present, or embrace joy in the present moment, no matter what it looks like. And Bekah is no stranger to this concept: her two boys, Titus and Ely, were both affected by a rare genetic disease (CLN2) that leads to the quick loss of skills and eventual passing in childhood. After her oldest son passed away Bekah wrote Can’t Steal My Joy, a book dedicated to helping those whose life path has taken an unexpected turn to rediscover joy. Today, Bekah shares some of her strategies on how to manage anticipatory grief, learning to make the best of the present, the importance of making time to grieve, leaning on your faith, and the power of acceptance. Key Takeaways with Bekah Bowman Ways to process a difficult diagnosis Managing anticipatory grief Learning to focus on the present & enjoy each moment Dealing with feelings of numbness The power of acceptance and embracing joy Why you should consider scheduling “grieving sessions” Leaning on your faith through grief The importance of honoring date nights with your partner Finding community in extended family and friends Learning to flex your “Joy Muscle” Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/28562177

072: Imerman Angels: Giving the Gift of Hope and Joy to Cancer Patients with Jonny Imerman 10/31/2023

072: Imerman Angels: Giving the Gift of Hope and Joy to Cancer Patients with Jonny Imerman Even though symptoms and conditions are always unique, there is one thing most people who’ve recently been diagnosed with a difficult condition have in common: the search for hope and answers to many questions. Today's guest, Jonny Imerman, has made it his life mission to bridge that gap; through his non-profit, Imerman Angels, Jonny has connected thousands of cancer survivors with recently diagnosed cancer patients. After getting diagnosed with cancer at 26 and going through years of complicated treatments and surgeries, Jonny found purpose and meaning in his traumatic experience by helping others. Through Immerman’s Angels, he helps those in the thick of it (including caregivers) navigate the uncertainties of a difficult reality, changing lives through human connection. In this episode, we discuss the benefits of opening up during trying times, overcoming survivor’s guilt, and the joy that comes from helping others. And as a helpful reminder: don’t forget to schedule your annual check-ups, they could help save your life. Key Takeaways with Jonny Imerman How yearly check-ups can save your life Finding purpose, meaning, and positivity in a difficult journey Spreading hope through survivor stories The life-changing power of genuine connection Seeking guidance through mentorship The joy in guiding others through difficult times Understanding survivor’s guilt Opening up as a way to process a difficult experience Connecting with caregivers going through similar journeys Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/28436372

071: Celebrating Down Syndrome Awareness & Inclusion and Redefining Potential with Amy Julia Becker 10/17/2023

071: Celebrating Down Syndrome Awareness & Inclusion and Redefining Potential with Amy Julia Becker During pregnancy, parents usually imagine what their child will be like and everything they’ll get to do together. You get excited about all the traditional milestones and look forward to experiencing this new reality. But for parents who receive difficult news after the birth of their child, such as an unexpected Down Syndrome diagnosis, this reality is shattered in a matter of seconds. Even the most understanding of parents are faced with grieving and adjusting. Amy Julia Becker (an award-winning writer and speaker on Disabilities and Family) experienced this first hand at the birth of her first child, Penny. Today, Amy Julia is sharing her family’s journey: from grieving the child they “thought” they’d be receiving, to adjusting to their new normal, to eventually realizing all the beautiful things that come from embracing our humanity as is. In honor of Down Syndrome Awareness Month, Amy Julia shares useful tips on things she wished she knew when her daughter was diagnosed, and on navigating the nuances of raising a child with different abilities. This episode is perfect for any parent who is currently feeling overwhelmed, alone, or nervous about their child’s disability and I hope you or someone you love and you get a ton of value from it. Key Takeaways with Amy Julia Becker The importance of Down Syndrome Awareness Month. Navigating a Down Syndrome diagnosis. Grieving and adjusting to the reality of parenting a child with disabilities. Finding community through shared parenting experiences. Dealing with pain, guilt, and shame as a parent of a child with a disability. Validating the feelings of parents going through disability journeys. Looking beyond the tragedy and negativity surrounding disabilities. Hierarchy vs Mutuality: an inclusive approach to disabilities. How to support your partner through a difficult diagnosis. The growth opportunities in every challenge. Accepting (and embracing) the uniqueness of every diagnosis. Focusing on the present in order to find joy. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/28322345

A Sneak Peek from Season 3 of Joy in the Journey 10/10/2023

070: How ‘That’s What She Said’ Gives Women Permission to Share Their Story with Jenette Jurczyk 06/13/2023

070: How ‘That’s What She Said’ Gives Women Permission to Share Their Story with Jenette Jurczyk If there’s one thing that I’ve learned since starting this podcast, it’s the power of sharing stories. And today’s guest would wholeheartedly agree with that, as she’s been helping women share their stories in powerful and meaningful ways for years. Jenette Jurczyk is the National Director of the and a Professional Storytelling Coach. She’s also the co-founder and President of the Family Room, a non-profit organization that supports foster children and families in her community. She’s also the host of the She Said Podcast, which features the women who have taken the stage, held the microphone, and shared their story. In 2015, Jenette found her purpose and has been using her experience as an actor and director ever since to direct live performances and create a space where women are empowered to share stories they never thought they could. Jenette has not only helped countless women, but she’s also created , a 3-day program where teenage girls have the opportunity to have the same experiences, which is so important and brings joy to so many for all the same reasons. As we wrap up season 2 of the podcast, I couldn’t be happier to share this conversation with all of you and end the season on such a positive and uplifting note. In this episode, you’ll get a glimpse of the tremendous impact that Jenette’s passion has had on so many women, how her work allows women to give permission to themselves, the beautiful and moving stories that are shared, and how much joy Jenette receives in return. Key Takeaways with Jenette Jurczyk The sense of relief you feel by sharing your story, listening to someone else's story and having an epiphany. How the power of the She Said Project gives women permission to talk about themselves. The importance of finding or creating a place to explore your thoughts on your own or through social media. The incredible story of Donna Jones and how much of an impact it’s had on Jenette. The success of That’s What Teens Say 3-day program for teenage girls and how important it is for young women to have the same experiences. The deep bonds that are created in spaces where you dive into the real life stuff instead of small talk. The pure joy that Jenette experiences every day by creating a space where women can share their stories. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/27088365

069: The Magic of Surrender and The Greatest Gift to Give to Your Child with Kute Blackson 06/06/2023

069: The Magic of Surrender and The Greatest Gift to Give to Your Child with Kute Blackson I am so excited to share this conversation with you today. Today's guest exudes positivity and inspiration, and I truly hope you'll enjoy hearing his message as much as I did. Kute Blackson is a transformational teacher, speaker, visionary guide, and national bestselling author of You Are the One and The Magic of Surrender. He also hosts the Soul Talk podcast and has dedicated his life to personal development, spirituality, transformation, and helping others navigate life's challenges. Kute was born in Ghana and grew up in London, England. When he was just 8 years old, he had his first experience as a public speaker when his father told him to "speak" in front of the congregation at his church. When he was 14, he was ordained and designated as his father's successor. A few years later, he made the difficult decision to walk away from the church to pursue his true calling in America, with two suitcases and $1,000 in his pocket. You'll hear Kute talk about the courage and vulnerability that parents possess when navigating a difficult medical journey. And I know you'll just love his advice on how we can only serve others if we're true to ourselves, the magic of surrendering and focusing on what we can control and understanding that the greatest gift that we can give to our kids is to see them for who they are. Kute is a wonderfully talented speaker, and I'm so thankful he shared his gift, knowledge, and inspirational story with us today. Enjoy! Key Takeaways with Kute Blackson How faith and spirituality was instilled in Kute at a young age. The difficult decision Kute made to leave London and pursue his true calling in America. Everyone has to live their own life, even when it’s against the advice of your family and friends. How we can only serve others if we’re true to ourselves. Sometimes the advice we receive is from people who are unhappy and unfulfilled in their own lives. How you can't take people deeper than you've gone yourself as a leader You never know what someone is going through, so be grateful and show compassion to others. How courageous and vulnerable parents must be to support children on a medical journey. The greatest gift that you can give to your child is seeing them for who they are. The power of surrender Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/27041145

068: Trusting Your Instincts to Advocate for Your Child with Eunice Clay 05/23/2023

068: Trusting Your Instincts to Advocate for Your Child with Eunice Clay If your child is in the hospital, there may be times when your motherly instincts kick in because you know that something isn't right. And as you'll hear from today's guest, there's nothing wrong with speaking up and advocating for your child, even when the medical teams tell you everything is fine. Before Eunice Clay's son was born, all the tests were clear. Soon afterward, Jahari was having trouble breathing as there was fluid building up in his lungs. After further testing, Jahari was diagnosed with a heart defect called TAPVR. (Total Anomalous Pulmonary Venous Return) Instead of his blood pumping back into his heart, it was only pumping into his lungs. This required immediate open heart surgery, with over 15 more of them to come, as Eunice watched her little kiddo live on a ventilator until he could have a double lung transplant. This meant that Eunice and her son would spend 46 weeks of his first year in the hospital. She was told that her son would have a life expectancy of 7 years post-transplant. Miraculously, Jahari will celebrate his 19th circle around the sun this year. Eunice shares two incredible stories of times when she knew something was wrong during that first year and used an advocate mindset to get the care that her child needed, despite the medical teams promising her that everything was okay. You'll hear the importance of trusting your instincts, asking questions, and that it's okay to speak up when you know something isn't right. Eunice shares beautiful advice for friends and family who want to become advocates, the power of journaling while doing your own research, and what she's learned by seeing the world from her son's point of view. Key Takeaways with Eunice Clay Why being a caregiver and advocating for children is more than a 24/7 responsibility. To never be afraid to ask hard questions to medical staff. How it’s okay to do your own research, but use actual medical trials and not just Wikipedia The importance of journaling with your own situation as part of your research. It’s a team effort, and parents and advocates are part of the team that is caring for fragile children. Always trust your instincts when you know something isn’t right, even if the medical teams think it’s fine. What Eunice has learned from this journey from her son’s point of view. How much strength Eunice has found in her faith to help get through the tough days. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26906808

067: Opening Career Paths For People With Hidden Disabilities with Veronica Porter 05/16/2023

067: Opening Career Paths For People With Hidden Disabilities with Veronica Porter At the age of 16, Veronica Porter’s son was in a tragic car accident that left him in a coma for three weeks. His brain injury resulted in permanent brain damage that has affected him and everyone around him in many ways. Still, his disability is not obvious or apparent to the naked eye. Despite the injury, Veronica’s son is a very high-functioning and capable young man whose symptoms only show up occasionally, leaving those around him who are unfamiliar with his story confused about his actions. Today, Veronica shares the story of how she started a business designed to combine the benefits of eating healthy food with the importance of making every member of our society feel seen and included: especially those with hidden disabilities and our veterans with PTSD. Through , Veronica teaches cooking classes that help others embrace the benefits of eating clean organic foods and uses those proceeds to grow food in Chicago. She employs people with hidden disabilities and veterans with PTSD, promoting a work pace that makes sense for them. In our conversation, Veronica shares excellent advice on the impact we can have on other people’s lives (both in our family and in our community), how to help children and adults with disabilities build their self-esteem, and how to support parents in our community caring for children with disabilities. Key Takeaways with Veronica Porter Ways to provide care for a child with hidden disabilities. Veronica’s vision on how to change the ways in which society handles hidden disabilities. How she is creating career opportunities for those with disabilities. The impact that clean, organic food has on your health. The impact that creating inclusion has in our community while breaking down barriers in communication. Making the choice to show up for others, and how easy it is to make someone feel better. Offering the gift of time, and listening without judgment or advice. How a strong marriage creates a strong family. Being present, and making space for flexibility and spontaneity. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26835954

066: Promoting Neurodiversity and Giving a Voice to Autism with Dr. Taylor Day 05/09/2023

066: Promoting Neurodiversity and Giving a Voice to Autism with Dr. Taylor Day Raising a child with autism is a process that requires patience, resilience, and an information-seeking mindset. But as rewarding as the journey can be, an autism diagnosis can alter the family dynamic and impact each family member in many ways. My guest today, Dr. Taylor Day, is a licensed psychologist who specializes in supporting autistic children and their families with diagnostic evaluations, therapy, and parent coaching. But she also knows firsthand the impacts of growing up with an autistic sibling. Her compassion and understanding of her family’s situation led her to a place where she could identify the gaps in the care of all family members. Her “whole family approach” uses a comprehensive model of care, including evidence-based interventions for autistic children and their siblings, and coaches parents to become more aware of their thoughts and feelings. She explains the importance of filling our own cups before trying to pour out of them empty so that we can better model behavior and set boundaries for all of the children in the family. In this conversation, Dr. Day shares invaluable advice on dealing with the grief of a difficult medical diagnosis, following your gut as a parent when dealing with teams of doctors, dealing with the overwhelm of caring for the whole family, and much more. Key Takeaways with Dr. Taylor Day How families can support autistic children through evaluations & interventions. Acknowledging the needs of the siblings of a sick child. How the “whole family approach” model of care works. The power of listening as a way to show support. Tips for parents to deal with overwhelm. Managing the grief, shame, anger, or denial that accompanies a difficult diagnosis. Following your gut instincts as a parent, and requesting second opinions. Why spending quality time with the siblings matters more than quantity. Setting boundaries for children in the home (including neurodivergent children). Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26780478

065: It Takes a Village: How to Add a Child Life Specialist to Yours with Caitlin McNamara 05/02/2023

065: It Takes a Village: How to Add a Child Life Specialist to Yours with Caitlin McNamara If raising a child takes a village, parents can use all the help they can get when navigating a difficult medical journey. But between medical teams, family, friends, and all the different groups of people that come together in order to provide the care needed, a lot of informational gaps can get left behind. From splitting time between the hospital and your family at home to preparing for discharge and transitioning home with (potentially new) medical equipment, it is quite easy to feel overwhelmed as a caregiver. That’s why Child Life Specialists like Caitlin McNamara dedicate their career to helping families bridge those gaps: they walk along with them on the journey and assist whenever possible by providing guidance and advice that could otherwise be hard for caregivers to find. And while we firmly believe that every hospital should have Child Life Specialists available, it’s unfortunately not the case yet. This is why Caitlin and her team created Child Core: an online coaching program dedicated to becoming an integral part of families’ support systems. Today, Caitlin shares with us incredible advice on creating plans for difficult moments or transitions in your journey, finding your community, and understanding the uniqueness of each journey. In the “Resources” section below, you’ll also be able to find Child Core’s free resources. These were designed to offload some pressure off of caregivers by providing guidance on using medical equipment, providing checklists to take to appointments, and much more. Key Takeaways with Caitlin McNamara The benefits of adding a Child Life Specialist to your support team. Navigating a difficult medical journey with your child as a caregiver. The impact of the journey on caregivers, siblings, and the child. Advice on creating your “village” or community, and how to ask for help. Preparing for the complexities of a transition home (discharge). Free resources that can help parents who are feeling overwhelmed. Remembering that what worked for others may not work for you. How needs may change with time, and how to process these changes. Finding a balance between caring for your child, your family, and yourself. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26716431

064: Raising an Advocate for Other Type 1 Diabetic Kiddos with Kendra Regas 04/19/2023

064: Raising an Advocate for Other Type 1 Diabetic Kiddos with Kendra Regas When Kendra Regas’ son Andon was 5 years old, he had already been dealing with several allergies, including a peanut allergy. That in itself would be plenty for any parent to worry about. Shortly after having his tonsils removed, Andon started wetting the bed. Soon afterward, Kendra booked an appointment to meet with the doctor. After describing the symptoms, the doctor said, “I think I know what it is, but I just hope it’s not.” This led to many more tests, including spending 3 days in the hospital until it was confirmed that Kendra’s son Andon had Type 1 Diabetes. And with Type 1, this meant that Andon would need insulin for the rest of his life. You’ll hear Kendra talk about how managing Type 1 Diabetes with a child and their siblings is like a family disease because it impacts the entire family. Any parent will tell you that kids love to have snacks. But with a child with Type 1 Diabetes, even the type of snack matters. Meals need to be structured at set times, and being aware of who is having a snack and when they’re having a snack has its own set of challenges. But you’ll also hear how much her family, including Andon’s siblings, have embraced the diagnosis. She talks about how they have become advocates for other Type 1 Diabetic kiddos and how much they enjoy teaching others about what a day in their life is all about, which is just heartwarming. Kendra and her family have a beautiful story to share, and I hope you enjoy hearing it as much as I did. Key Takeaways with Kendra Regas How receiving a Type 1 Diabetes diagnosis quickly changed their world. The importance of keeping structured meal times and not eating whenever and whatever they want. Dealing with the amount of attention that Andon receives in comparison to the other kids. The difficulty in managing a child’s temptation to have extra snacks or candy. Finding comfort with other groups and families who are managing the same circumstances. The joy in seeing Andon and his siblings advocate for Type 1 Diabetics and their willingness to share and educate other kids their age. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26586216

063: Thriving With a Disability and Living Without Limits with Jennifer and Savannah Zirbel 04/11/2023

063: Thriving With a Disability and Living Without Limits with Jennifer and Savannah Zirbel When Savannah Zirbel was only two and a half years old, she lost her left leg and arm in a terribly unfortunate accident. In the blink of an eye, Savannah and her family’s world was turned upside down as they were left to learn how to navigate life with a disability as their new normal. What they didn’t know was how powerfully inspiring and transformative this journey would turn out to be: Savannah refused to let her disability define her, pushing past every limit she encountered to prove to herself and others that she could accomplish whatever she set her mind to. Savannah is a teenager now and recently finished first in SIX different state swimming events which is just incredible. She’ll be competing in the nationals in just a few weeks with her eyes set on swimming her way to another title. As you can imagine, Jennifer is a very proud mama. I invited Savannah and her mom to join me on today’s episode to share their inspiring advice on keeping a positive outlook throughout adversity, the best ways to approach people with disabilities, and how Savannah has already become a mentor to others. Jennifer and Savannah remind us of the importance of community and friendship, how most of our limits are in our minds, and how a slight shift in perspective can go a long way in finding joy in your journey. Key Takeaways with Jennifer & Savannah Zirbel Not letting a disability define you, or what you can accomplish. Finding motivation and strength from both people who believe in you, and people who don’t. Letting go of control and taking leaps of faith as a parent of a child with a disability. The best way to approach and interact with people with a disability. How they’re others about life with a physical disability, and encouraging them to ask questions. The importance of keeping your faith through hardships. How to shift your perspective to a more positive one throughout adversity. The growth you experience when navigating a difficult medical journey. The power of community and great friendships. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26468634

062: Giving Back by Bringing JOY to Cancer Patients with Joy Harmon 04/04/2023

062: Giving Back by Bringing JOY to Cancer Patients with Joy Harmon I’m so excited to welcome Joy Harmon back to the podcast, as this will be the first time I’ve had a guest on the show for a second time! It feels even more appropriate when you consider that Joy had not one, but two NICU journeys with her daughters. And I’m very happy to say they are thriving right now. Joy is also a breast cancer survivor who underwent treatment at the beginning of COVID when everything changed for everyone. What she has done since then is truly remarkable. For any parent going through a medical journey, there’s a tendency to tell people, “I’m fine,” when the reality is, everything is anything but fine. With so much going on back then, needless to say, it was a challenging time. There were so many unknowns with the pandemic and her cancer treatments, but you’ll also hear how much her daughters struggled with the transition of returning to school after spending so much time together at home. I’m sure most parents can relate to that. Thankfully, Joy had a great support system during that time in her life, and you’ll hear just how instrumental it was for her to get through it all and the lessons that her daughters have learned from this experience. Perhaps most importantly, Joy talks about the need to give back and how the idea for her wonderful non-profit, Bringing JOY, came to be. Her charity now serves 9 cancer centers, honors the vets on Veterans Day and supports Breast Cancer Awareness Month by bringing a little JOY to others that are going through so much. Her efforts are definitely helping others to know that they are not alone, letting them know that others are thinking about them… One Little Bag at a Time. I hope you’ll love hearing her story and what she has accomplished as much as I do. Key Takeaways with Joy Harmon Dealing with cancer treatments and raising two daughters when COVID hit. How difficult it was for her daughter to go back to school after spending so much time at home during the pandemic. The aftermath of how the unknowns of COVID and a cancer diagnosis impacted her kids. The feeling of always waiting for the other shoe to drop after having gone through so much. The importance of having a network of friends and family to support you during the really difficult days. How beautiful it is for kids to see that sometimes we need help at such a young age. How Joy is teaching her kids that when help is given, there is a time to give back and support the ones who helped you. The immense support that Joy received from the beginning of her non-profit, Bringing JOY. How important it’s been for Joy to stay involved with the world of cancer foundations. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26399313

061: How Lacey Bracken is Paying It Forward with the Finley Forever Foundation 03/28/2023

061: How Lacey Bracken is Paying It Forward with the Finley Forever Foundation There truly is nothing more moving than seeing parents who have experienced the loss of a child look for meaningful ways to celebrate their child’s life. Some say grief is love with nowhere to go, and channeling it toward honoring a loved one can be a beautiful way to heal and find joy in the journey. I invited Lacey Bracken to join me on this episode and share the story of her beautiful family. Lacey is a mom to four little girls, including Finley, their 3-year-old daughter, who tragically lost her battle with cancer; Lacey has found incredible ways to celebrate life and pay it forward. Shortly after Finley’s passing, the Brackens founded the Finley Forever Foundation, whose primary goal is to provide “hope, support, and financial assistance to families and children affected by cancer.” From throwing Finley a yearly charitable birthday party (the Finley Fest), with which they’ve raised over $80,000, to the Lights & Ladders Brigade (a team of volunteers that lights up the homes of families battling cancer on Christmas), they’ve touched the hearts of hundreds of families and kept Finley’s spirit alive. Join us on today’s episode as we discuss dealing with a childhood cancer diagnosis, managing jobs/children/tasks while caring for a hospitalized child, finding support and asking for help, and many other helpful topics. Key Takeaways with Lacey Bracken Managing work, family, and other tasks while caring for a hospitalized child. Finding ways to stay calm through difficult moments and decisions. How reaching out to families walking a similar path can be incredibly helpful. Dealing with the loss of a child, and how to avoid letting grief consume you. Celebrating life and honoring loved ones that are no longer with us. How paying it forward can help you heal. Finding the balance between “good” and “bad” thoughts. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26361075

060: The Story of Mattea Joy from Her Dad’s Perspective with Gary Freedlund 03/22/2023

060: The Story of Mattea Joy from Her Dad’s Perspective with Gary Freedlund As you can imagine, today’s guest is a very special one. For anyone who has been following the podcast, the truth is I haven’t had many guys on the show. But that doesn’t mean it’s because the male perspective is any less important. That’s why I’m so happy to finally introduce you to my husband, Gary Freedlund. We’ve talked about doing an episode on the podcast together many times, but he wasn’t quite ready to share his side of the story... until now. For those that don’t know, Gary has worked as a Child Life Specialist in a pediatric oncology outpatient clinic here in Illinois. And as such, he has a bit of a different perspective working with families that are going through a medical journey since he’s been on both sides of those life-changing events. So today, Gary shares the Freedlund family journey with Mattea Joy from a Dad’s perspective. You’ll hear what it was like to deal with our new normal when she was diagnosed with Down’s Syndrome and what those 9+ months were like for him. He also talks about how important it was to make sure our oldest daughter Reese had as much of a normal life as possible. From making sure she ate supper at home and slept in her own bed every night to also being strong and trying to keep things together for the family. You’ll also hear how his perspective changed once he understood that families with other kiddos can’t always be together at the hospital because, as we all know, there are bills that still need to be paid. I hope you’ll enjoy this conversation with the man I’ve shared so much with on this incredible journey and that you’ll share it with the man in your life. Key Takeaways with Gary Freedlund How difficult it was to just trust the advice from doctors in his role as the parent and not a medical professional. The realization that the meaning of Mattea’s name was “gift from God.” You always get to decide what your new normal looks like. Not everyone is going to be able to support you the way that YOU want them to. How important it was to keep a normal life at home for their 2 year old child while spending so much time at the hospital with Mattea. Staying strong as the provider while also having the ability to be in touch with your emotions. Seeing the miracles that are happening around you that you’re not focusing on during a medical journey. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26301102

059: How Sweet Darren’s Baked Goods is Changing Lives with Jolene Boothe 03/14/2023

059: How Sweet Darren’s Baked Goods is Changing Lives with Jolene Boothe “Changing lives one baked good and one scoop at a time.” One of the first milestones a new parent looks forward to is their child’s first word. But when Jolene Boothe noticed that her sweet son, Darren, hadn’t started talking by the time he was 18 months old, she began to worry. By the age of two, they were still waiting. And if that wasn’t stressful enough, she was pregnant with her twin daughters by that point. They say it takes a village to raise a child, and those words couldn’t be more accurate when you’re a parent with a special needs kiddo. In today’s episode, Jolene shares how challenging those first few years of motherhood were. From dealing with the unknowns of what was wrong with her first child, finding testing and treatment for her son, the stress of bringing twins into the fold, and coming to terms with the fact that her life was going to be different. Jolene talks about how she found beauty in her grief and knew that God wouldn’t give her more than she could handle. You’ll also hear how this experience has made her humble and grateful for Darren and all the families facing similar challenges. But above all else, you’ll love all the great things she’s doing with her bakery, Sweet Darren’s, changing lives one baked good and one scoop at a time. Key Takeaways with Jolene Boothe The stress of realizing Darren wasn’t talking while she was pregnant with twins. Comparing your struggles to another family’s struggles is natural but your challenges still matter.. The peace from knowing the special needs of her child wasn’t life threatening, like a cancer diagnosis. How Jolene came to terms that her life was going to be different than she imagined How you can still find beauty in moments of grief. The positive impact that she is making with Sweet Darren’s baked goods. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26220609

058: Ending The Stigma of Mental Health Issues with Kathi Meyers 03/07/2023

058: Ending The Stigma of Mental Health Issues with Kathi Meyers Friendly Warning: The content in this episode may be difficult for some listeners In recent years we've seen a big shift toward mental health awareness, but unfortunately, our society doesn't always acknowledge mental health in the same way as physical health. I am so grateful to have Kathi Meyers on the podcast today as a powerful reminder of the things we can do to prioritize our family's mental health. Kathi and her husband, Brandon, have their hearts rooted in service. Their commitment is towards ending the stigma associated with mental health issues through education & changes in public policy. Together they started the Samuel R. Myers Foundation for Suicide and Mental Health Awareness in 2017, shortly after their 19-year-old son's suicide. Kathi has worked in the medical field for nearly 30 years, while Brandon has worked for more than 26 years in law enforcement. Their personal and professional experience provides a unique insight into mental health challenges. They remind us that mental health does not discriminate and can affect even the most involved, caring, attentive, and close-knit families from healthy homes. By sharing Sam's story, Kathi provides incredible guidance on different resources available to parents and caregivers, the various steps they took towards finding help for their son, the obstacles they had to overcome, as well as the social pressure their son felt while navigating OCD, intrusive thoughts, anxiety, and even digestive issues. Kathi also shares difficult but heartwarming advice on dealing with the aftermath of a traumatic event like her son's passing, including her journey with post-traumatic stress disorder and situational grief. Hearing a story like Kathi's can be difficult for some, but it is an important and eye-opening conversation that will leave you with a few helpful tools that may one day help you or someone you know. Key Takeaways with Kathi Meyers Prioritizing mental health at the same level as physical health. Ending the stigma associated with mental health through education & public policy. Mental health does not discriminate, and can affect anyone. Great resources for parents and caregivers of children with mental health issues. How mental health can affect the whole family. The power of local communities, and supporting those struggling with their mental health. How to deal with post-traumatic stress disorder & situational grief. Movements & policies that are changing mental health awareness. Creating beauty from ashes: moving forward from a tragic event. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26134779

057: Inspiring Children To “Hear Their Song” with Dan Rubins 02/28/2023

057: Inspiring Children To “Hear Their Song” with Dan Rubins During his time in college, Dan Rubins wanted to get involved in a music program, but he found that many of them were generating competition among students, and he was seeking connection and community. And so, was born: a non-profit serving kids ages 6 to 18 with serious illnesses and complex health needs to make their voices heard through collaborative songwriting. Based in NYC but available virtually nationwide, Hear Your Song helps children with a wide range of physical and mental-health-related diagnoses share their medical journey or emotions through song. It is a child-driven process where children share what they want and choose how to define themselves. From silly songs to emotional songs, from explaining the journey of a particular illness to songs about inequality, the children Dan and his team have worked with never fail to impress with their creativity, maturity, and determination. This project helps children feel empowered and in control of what is usually an uncontrollable and disheartening situation. Today, Dan has joined me on this episode to share more about his work, how you can use music as a tool, and how you can get involved in this beautiful project. I highly recommend checking out their to listen to many beautiful and moving songs they’ve created alongside these brave children. Key Takeaways with Dan Rubins The power of music for personal development. How music is used as a learning and advocating tool. How children with a diagnosis are empowered to define themselves outside of their disease. The beautiful ways that Hear Your Song has provided an emotional outlet for children in difficult medical journeys. The connection and relationships that are being built with others who are on similar journeys. Why creating a safe and empowering environment for children to find their voice is so important. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/26058525

056: Humbled and Blessed by Blue Hearts and #CarterStrong with Jennifer Fortin 02/21/2023

056: Humbled and Blessed by Blue Hearts and #CarterStrong with Jennifer Fortin Time passes very slowly when you’re in a hospital waiting for updates on your child’s surgery. But for Jennifer Fortin, seeing the Facebook updates on her phone in the hospital waiting room opened up a floodgate of tears. People from all over their community had started the hashtag #CarterStrong for their little boy, posting blue hearts, buying t-shirts, and sending prayers. And at that moment, Jennifer understood the complex ways in which people come together in moments of need. Carter is now a strong and happy 10-year-old boy, but when he was 7, he was diagnosed with a brain tumor which turned into a brain cancer diagnosis. Brain surgery successfully removed the tumor, and after several rounds of radiation and chemo treatments, he finally got the “all clear.” But the journey this family embarked on has taught them resilience, strength, the power of community, courage, and the impact of helping others in small ways. Today, Jennifer joined me on this episode to share some wonderful tips for parents currently in the thick of their journey or for those of you supporting a family. From how to find your community to how to source strength and ask for help, Jennifer reminds us that “the more you look for your blessings, the easier it is to see them.” Key Takeaways with Jennifer Fortin The challenges in processing a difficult diagnosis. Supporting your children during hard medical journeys. Balancing care between the siblings at home & your hospitalized child. How others can support families in small yet helpful ways (laundry, cleaning, meal trains, a coffee) Why sharing your story with others can help you or another family. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/25980960

055: The Outpouring of Love and Joy from ‘Mustaches for Maddie’ with Chad Morris & Shelly Brown 02/14/2023

055: The Outpouring of Love and Joy from ‘Mustaches for Maddie’ with Chad Morris & Shelly Brown When Shelly and Chad’s little girl, Maddie, was diagnosed with a brain tumor at 9 years old, their regular lives with their five children were put on hold. Getting Maddie through surgery became their number one priority, and their family, friends, and neighborhood rallied together to help their family through it. But one person in particular, Shelly’s cousin, embodied what it truly means to show up during difficult moments in small but meaningful ways. It all started when she posted a silly picture of herself wearing a mustache, which was sure to make Maddie giggle, with the hashtag #MustachesforMaddie. And while she couldn’t have predicted how viral this movement would go, her small act of kindness is the perfect example of how simple it can be to show up for someone. As the hashtag gained traction, an outpouring of love happened from hundreds of people who sent funny little pictures for Maddie to enjoy. From putting mustaches on babies, cars, pets, stuffed animals, entire offices worth of doctors, classrooms, and more, even news stations picked up the story (including CNN and the Hallmark Channel). Shelly and Chad transformed Mustaches for Maddie into an award-winning book. They share great insights on handling the pressure parents feel during this time, managing the day-to-day, asking for (and accepting) help from others, and dealing with the uncertainties of a difficult diagnosis. And today, they’re sharing their story to inspire anyone going through a difficult journey. This episode is fun, inspiring, and uplifting, and I hope it serves as a great reminder to keep spirits up and celebrate every little win along the way. As they say, laughter really is the best medicine. Key Takeaways with Chad Morris & Shelly Brown The pressure on parents to care for a sick child, alongside other responsibilities. Dealing with the uncertainty of a difficult diagnosis. Managing the impact that a difficult medical journey has on siblings with feelings of jealousy, frustration, sadness, and anxiety. When to ask for help, and how to accept help from your community. The little ways anyone can show up and support those in need. How a small act of kindness can go a very long way. Keeping the spirits up, and looking out for moments of joy. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/25906233

054: The Entrepreneurial Spirit of a Special Needs Parent with Cari Desiderio 02/07/2023

054: The Entrepreneurial Spirit of a Special Needs Parent with Cari Desiderio Advocating for our children is one of the most important parenting tasks there is; but it is one that becomes many times more challenging when it comes to children with special needs or going through difficult medical journeys. And when your child is diagnosed with a disease so rare that only a few other children in the entire world have been diagnosed with it, the process becomes much more challenging. I’m so happy to have Cari Desiderio on the show to share her best tips on advocating for children with special needs, as she is no stranger to the rare disease world. Her little angel Hannah is a miracle baby who at 1.5 years old was diagnosed with CDK13: a very rare genetic condition characterized by congenital heart defects, intellectual disability and characteristic facial features. With very little research available on this condition, Cari and her family were faced with the reality of navigating through the unknown. Traditionally, doctors and their teams take charge in caring for our children. But in their case, Cari had to take many matters into her own hands. Today, she’s sharing with us how she helped shape Hannah’s care, education, and overall well being. You’ll hear how she found the strength and courage to speak up, how she connected with families with common stories for support, how she found time for self-care, and much more. I just loved how Cari describes parenting a child with special needs as an almost entrepreneurial role: you have to be fierce, network, connect, ask for help, and be resourceful. She reminds us to care for ourselves during the process to avoid burnout and celebrate every little milestone to add some joy to a challenging journey. Key Takeaways with Cari Desiderio The best ways to advocate for your child’s (medical) needs. How to find support in families with common stories and how to reach out. Finding the courage and strength to navigate the unknown. Having an entrepreneurial spirit with your child’s care. The importance of self care: maintaining your own health and avoiding burnout. Adapting to your new reality, and dealing with the grief of “what could have been”. Creating moments of joy by celebrating the little milestones and accomplishments. Show Notes: Get Full Access to the Show Notes by visiting: . Rate & Review If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on , , , or wherever you listen, so future episodes are automatically downloaded directly to your device. You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU! /episode/index/show/matteasjoy/id/25837671

Joy In The Journey

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