Joy In The Journey

Caring for a newly diagnosed child going through a medical journey can be scary and overwhelming. Especially when finding resources meant to support you, like Child Life Specialists, requires extensive research and planning.  This is why I am so grateful to our guest today, Jenna Kmitch, for courageously sharing what her process looks like beside her daughter Sydney, who was diagnosed with neuroblastoma just a few weeks after birth.  Jenna is the founder of Love Smiles, an organization dedicated to bringing moments of peace and joy to families with pediatric cancer through stories.  Today, she shares her experience and advice on navigating surgeries, treatments, PICU stays, and returning home and how to enjoy parenthood through it all. Jenna found joy in her journey by leaning on her baby's resilience and the community and medical staff that showed up for her, and she hopes to inspire others to do the same. Key Takeaways with Jenna Kmitch The challenges of becoming a mom during a pandemic Navigating a baby's cancer diagnosis  Processing the risks & results of infant surgery  The role of child life specialists in the PICU How to lean on nurses and doctors for additional support  The stages of grieving a diagnosis  Finding yourself as a mom during caretaking  Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/82. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/81. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/80. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

We've all experienced those days where it feels like we catch every red light on a busy commute and nothing seems to be going right. But what happens when we're intentional about stopping to look for the small glimmers of joy, even in those heavier days? Allow me to introduce you to today's guest to answer that question. Gina Prosch is a writer and teacher who has made it her mission to help children and adults find joy in even the most difficult days. Her childrens books are perfect for little ones who may be experiencing a harder season of life, and provide parents with inspiring ways to keep hope alive.  In our conversation, you'll hear a few ways you can train and reframe your mind to look for the joy around you, reflect on your past experiences, and tools to guide children through failures and tough challenges.  Key Takeaways with Gina Prosch Finding hope during a tough time  Establishing healthy gratitude and accountability habits Training and reframing your brain to look for joy  Tips to navigate a harder season of life with optimism  Helping children grow through mistakes and failures  The difference between positive and negative instruction  Shifting your mentality from “I have to” to “I get to” Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/79. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Juli Boit is no stranger to helping those in need. She's an author, family nurse practitioner, and international non-profit director of Living Room International, 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: MatteasJoy.org/78. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/77. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

As today's guest will tell you, “You become a NICU parent in the blink of an eye.”  Katie Ross is the creator of Blooming Littles 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: MatteasJoy.org/76. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/75. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/74. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/73. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/72. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/71. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

I'm so excited to get season 3 of the Joy in the Journey podcast underway and I wanted to share a sneak peek with all of you. If there's one thing that I've grown to appreciate after starting this podcast, it's the power of a shared story. And in season 3, I have an incredible array of inspring individuals lined up. So enjoy this sneak peek and stay tuned for a new episode next week! Don't forget to subscribe on Apple Podcasts, Spotify, Stitcher, 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!

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 She Said Project 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 That's What Teens Say, 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: MatteasJoy.org/70. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/69. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/68. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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 Ask Aunt V, 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: MatteasJoy.org/67. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/66. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/65. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/64. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/63. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/62. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/61. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/60. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

“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: MatteasJoy.org/59. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/58. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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, Hear Your Song 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 YouTube channel 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: MatteasJoy.org/57. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/56. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/55. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

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: MatteasJoy.org/54. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

When our children are experiencing big feelings, it can be very tempting as a parent to try to do everything in our power to make our children feel better. But what if the best thing we could do for them is actually help them experience their emotions with confidence, rather than running away from them? That is what Taes Leavitt, my guest on today's episode, has dedicated her life to: helping parents and children navigate their big feelings. Taes has been called the “new age Mr. Rogers” for her extensive work in children's entertainment, for which she has earned two Juno Awards (the Canadian version of the Grammys). She has spent the last 15 years creating empowering television and stage content for kids and in more recent years she has shifted all of that research and experience to inspiring kids and parents through a project called the Big Heart Journey. Her research has revealed that the biggest thing that holds people back is not knowing how to navigate big feelings such as bullying, failure, guilt, sadness, and heartbreak. And today, she shares valuable resources on how to identify and cope with those emotions, and how we can help our children navigate difficulties like medical journeys with confidence. She also provides some great tools such as meditation videos for children you can start implementing with your kiddos today that have been shown to boost resilience and confidence, as well as reduce anxiety. And the best part, these tools are available for FREE!

Caring for a hospitalized child or teenager can feel like a scary and overwhelming experience, but being the hospitalized child or teenager can truly make you feel like you're missing out on real-world experiences.  Thankfully, there are wonderful people who are making a difference to create fun experiences for these families. I'm thrilled to introduce you to today's guest, George Hardin, as he shares all the wonderful work he does with hospitalized children and teenagers.  From hosting music festivals to bringing in therapy dogs, making stuffed animals, discussing sneaker styles, and much more, George truly exudes care, compassion, and joy in his work.  George is currently the manager of volunteer services and in-kind donations at La Rabida Children's Hospital in Chicago and has previously worked at Lurie Children's Hospital in a similar role. He has extensive experience in bringing joy and comprehensive family care to families all over Chicago and to his two little girls.  George shares some wonderful tips on supporting the patient and the family as they navigate hospitalizations. He offers advice on how to be of service to a family in need, and he brings a new perspective to asking doctors questions and staying informed. He also reminds us that supporting children goes beyond medical support, as the social and emotional aspects are just as important.  George's work is an excellent example of how easy it can be to bring a much-needed smile to someone's face and how giving back, and volunteering can be a powerful and gratifying experience. I hope this episode brings you joy, inspiration, and motivation to make a difference to those who need it in your community.  Key Takeaways with George Hardin The power of volunteer work and how you can make a difference. How George brings joy into the lives of hospitalized children. Providing mental health resources for children, teens, and young adults as outpatients. Comprehensive family care that also supports siblings and parents of hospitalized children. How to support as a family member: asking what the family needs and how to help. George's perspective on how to ask your doctors questions when you feel unsure or unclear. The importance of talking to hospitalized children about their interests, as they can get tired of only dealing with medical staff.  Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/52. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

After the lessons and connections my family experienced during our journey in the NICU with our daughter Mattea, I knew I wanted to be a part of the moving force that helps so many families in the NICU find their own strength and support.  Today's guest is Theresa Schreiber. Theresa also knows what it's like to spend time in the NICU and lose a baby, and she talks about how she transformed that loss in a beautiful way to give back to the NICU community.  For those that don't know, Theresa was a teacher for 15 years. She talks about how her experiences with the NICU staff would inspire her to become Family Support Program Coordinator through the March of Dimes, where she helps educate parents on their NICU journeys.  She shares many different resources available to parents as well as some of the areas of concern and how to address them. She reminds us of the importance of self-care as NICU parents and how finding connections within the NICU community can make the experience feel less daunting and intimidating.  You'll also hear great advice on celebrating milestones, overcoming setbacks, joining classes to get more information on how to care for your NICU baby, and dealing with the parental guilt of feeling joy and pain simultaneously throughout your journey.  Key Takeaways with Theresa Schreiber The best ways to support NICU parents during setbacks and heartbreak. Celebrate milestones, no matter how small, to help keep a positive outlook. How former NICU parents can offer support to current NICU parents. Family Support Programs and other helpful resources parents can use. The benefits of Kangaroo Time, Skin-To-Skin Bonding, and understanding the baby's development. How holidays look different while in the NICU and easy ways to celebrate them. The power of community and connection with other NICU parents. Dealing of the parental guilt of feeling joy and pain at the same time.  Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/51. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

There are very few things as powerful as the strength, courage, and resilience parents find when caring for their sick children. As Dr. Patrick Myers puts it, it is “mind-blowing” what families can do when thinking about their kids. I thought a beautiful way to kick off 2023 would be to celebrate this bond that unites NICU families by inviting Dr. Patrick to share with us the biggest lessons he has learned and teaches, to help families navigate the NICU journey. This episode is especially helpful for those of you currently in the NICU, or for extended family and friends who want to know how to best support their loved ones during this difficult journey. Dr. Patrick Myers is the Fellowship Director of Neonatal and Perinatal Medicine at Lurie Children's Hospital at Northwestern University. I've known him since our daughter Mattea was born and I can tell you that his passion for nurturing the next generation of physicians to be caring, compassionate, and connected to their families is truly heartwarming. Dr. Myers shares excellent advice on how to advocate for your children during their NICU stay, what he has learned from both parents and the babies he works with, and advice on how best to support each other through difficult times. I have no doubt that his work will certainly lead to a new generation of doctors that are not just excellent practitioners, but also indispensable emotional support for families. I hope you find this episode as inspiring as I did, and that hearing his advice will help you and your family feel more confident during your NICU stay. Key Takeaways with Dr. Patrick Myers What you can expect from an unexpected stay at the NICU. How families find resilience and strength during difficult life changes. The miraculous adaptability and strength of NICU babies. No two NICU experiences are the same, but connecting with families in the NICU can make you feel less alone. Advice for family members & friends wanting to support their loved ones. The importance of rest and tag-teaming your NICU stay whenever possible. Tools to lessen the emotional burden of your stay. How to create a positive relationship with your medical team. How he's training the next generation of physicians to be better emotionally equipped. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/50. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

It's a new year and I thought there'd be no better way to start off 2023 than to introduce you to my good friend, Sarah Hemenover. Sarah and her family are such a breath of fresh air and a beautiful reminder that NICU experiences, while sometimes difficult, can have incredibly happy endings. Sarah and her husband Matthew are the parents to three beautiful children, and I'm so grateful to have them in our community. Today, Sarah candidly talks about their NICU journey with their youngest daughter, Ava Jane. Ava Jane was born full term but due to complications at birth she had to be rushed to the NICU, where she spent the first two months of her life. This unexpected medical emergency forced Sarah and her family to slow down and truly reevaluate their priorities. The experience taught them the power of relying on your community, letting others show up for your family, and spending time with “your humans''. Her beautiful story has the happiest of endings because Ava Jane is a happy and healthy little girl who you'd never believe was once a miracle NICU baby. Sarah shares incredibly helpful coping strategies for parents in the NICU, which include journaling in order to help you celebrate the little wins and put into perspective how far you've come. I hope this episode inspires you to look out for the small wins this new year! Key Takeaways with Sarah Hemenover Reminders that while the NICU journey can be long and hard, it can also be beautiful and worthwhile. How hard challenges force us to stop, slow down, and reevaluate our priorities. Opening yourself up to help and support from your community. Coping strategies for sudden and unexpected medical emergencies. Journaling as a way to celebrate little wins and put hard moments into perspective. Taking the time to nourish your life and relationships outside of the hospital during your NICU stay. Managing the isolation that comes from being a (NICU) parent. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/49. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

The holiday season is always an incredible time to make wishes come true, but for Gina Cordes and Lisa Holt, it's their full-time job. I invited these wonderful ladies because they are real-life Fairy Godmothers. Together, they have granted 40 wishes for the Make-A-Wish Foundation, with no plans of stopping anytime soon. When we think of serving others, it's easy to focus on how it will benefit them and make their lives a little better. But as Gina and Lisa's stories will show you, helping our local communities can have an incredible impact and bring joy to everyone involved. I hope you enjoy this conversation as they share how they became Wish Granters for the Make-A-Wish Foundation, what the process looks like, and how they help connect children and their families to their wishes. They also remind us that while medical teams typically refer children to Make-A-Wish, anyone can refer a child for a wish if they meet the requirements. From making Disney trips come true, to connecting a child with their favorite YouTuber or giving a little girl a real ballerina experience, the stories these ladies share today are pretty tender and will pull at your heartstrings. But they are also extremely moving examples of how easy it can be to change the life of a local family simply by showing up and being there for them. I hope you'll enjoy this episode as they have some great advice on ways to show up for anyone in need and spread some holiday spirit as we head into the new year. Key Takeaways with Gina Cordes & Lisa Holt How serving others brings joy to everyone involved. How anyone can become a Make A Wish volunteer, and how the process works. Some of the inspiring stories of the beautiful wishes Gina & Lisa have granted. The magic of coming together as a community to support a family in need. Advice on how to support families during difficult times. Reasons not to sweat the small things in life, and truly appreciate what you have. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/48. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Dave Blanchard, the Founder and CEO of the Og Mandino Group, has delivered over 500 powerful speeches everywhere from Boston to Budapest. And through them, he's made a rather heartbreaking discovery: everytime he asks his audience if they can remember the last time they truly felt heard and understood, only a few people actually raise their hand. And the few people that did could vividly remember when that occasion was, even when it had already happened several years ago. But often, we forget how powerful it can be to listen to others, and in return truly feel heard. I'm grateful to have this conversation with Dave so that he could provide valuable wisdom on how pain and suffering can be a gateway to being a gift in the lives of others, and help us navigate the hard challenges that can be thrown our way. Through his work and three books, Dave helps people improve the neural pathways in their brains by creating new habits that will support them in the journey they desire. He reminds us that pain and suffering connects people, and that embracing it can help anyone, including parents navigating a journey with a sick child, feel less alone. His best advice is that having empathy can truly set you free. He encourages those he works with to take feelings like pain, shame, or guilt, and use them to serve others. Key Takeaways with Dave Blanchard How painful experiences can give you a unique ability to serve others. Embracing empathy and understanding as a tool for healing. Valuable techniques to change your negative thought patterns and habits. The powerful impact of listening to others. How helping others process their feelings can help us process our own. The effect of traumatic experiences on our ability to catastrophize and how to fix it. The importance of finding joy in the present moment. Letting your faith guide you in moments of adversity. Letting go of expectations in order to find true happiness. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/47. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

When the Bruno family was in the thick of it with their daughter Holly fighting through the final stages of her battle with cancer, their community wanted to help. When Heidi was asked how they could help, she mentioned that they could help take care of some yard work that needed a little TLC as they were spending a lot of time at the hospital for Holly's treatments. What happened next was incredibly heartwarming and beautiful. A few days later, 50 to 100 people showed up to their front yard and completely transformed it, going above and beyond anything that Heidi or her family could have ever imagined. But this work was about so much more than their yard: it was an incredible outpouring of love from a community that just wanted to help and serve a family going through incredible hardship. Since then, Holly's beautiful and brave spirit has been kept alive by her family, who have done everything to spread the message that "love is everywhere." This message, their battle cry, was created by Holly herself during one of her hospital stays. Despite everything she was going through, their little girl couldn't help but see the love and joy that surrounded her. Creating space for parents who have lost a child to share their stories on this podcast has been the most fulfilling part of this project. And even though today's story is emotional, I hope this conversation will fill your cup with hope and gratitude. Heidi shares lessons about the power of serving others and letting others serve you. I hope you'll enjoy hearing the beautiful story of Holly Bruno. The energetic, adventure-loving, and fiercely loyal little girl who lost her battle with a rare soft tissue tumor but started an incredible movement that has helped others see the joy in their journey. Key Takeaways with Heidi Bruno Finding courage in listening to other people's medical journeys. How to cope when you receive heart-shattering news. Choosing to see that love is everywhere, even in the hardest moments. Learning to let people serve you during hard moments & the joy and love you receive from it. Rediscovering faith after going through a traumatic experience. Processing grief and helping siblings manage their emotions and feelings of loss. Creating space to remember the loved ones we've lost. How giving back and serving others can help you heal. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/46. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

In 2010, Banah left Syria with her 5 year old daughter Rama, and her 9 month old baby boy. Rama was diagnosed with Goldenhar Syndrome, and coming to the US for medical care was one of her only options. But just a few months later a war broke out in Syria making it impossible for Banah and her children to her homeland. As a result, they started from scratch and have been in the US ever since. The ability to introduce Banah and her daughter to each of you is one of the most beautiful privileges I've had on this show. Their story is one of resilience, positivity, strength, and an impressively unbreakable spirit. Goldenhar Syndrome is a rare congenital condition characterized by abnormal development of the eye, and ear, which in Rama's case required jaw surgery. I first met them while volunteering at the Ronald McDonald House, when Rama had just had her first surgery. One of the things that has remained in my heart, even after 12 years, is Banah's beautiful smile and incredible ability to always see the good in things. Even throughout Rama's multiple interventions and Banah herself getting diagnosed with cancer, they found the strength and resilience to keep going and get better. Banah has since become an art teacher and a volunteer at the Ronald McDonald House, and has refused to let difficulties such as language barriers stop her from building a new life for her family. In today's episode she shares her best advice on how to keep going when you run into a problem you can't solve, how giving back to the community helped her find joy and purpose, and how to support a child going through a difficult medical journey. She reminds us that looking for happiness in the small things is always an option, and can truly help us stay strong and inspire our children to do the same. She chooses to take her life step-by-step, and I invite you to come listen to her inspiring story that will certainly leave you with a warm heart and a smile. Key Takeaways with Banah Abourobeieh Banah's advice for staying positive and resilient through life's adversities. Finding the strength to rebuild a life from scratch in a new country. Advice on helping your child through their medical journey. How the Ronald McDonald House Charities help families in need. Giving back to the community as a source of inner strength and purpose. How staying in action can help you find solutions to your problems. How connecting with others going through a similar medical journey can inspire you to keep going. Using art and other forms of self-expression as an outlet for self-care. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/45. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

As parents, we try to shelter our children from as much pain and danger as possible. But for a parent of a child with Brittle Bone Disease (Osteogenesis Imperfecta), even something as soft as a carpet can lead to a broken bone. Rachel Glad's son, Nathan, was diagnosed at birth with a severe form of this disease, which causes him to break a bone on a monthly basis (if not more) due to his bones being extremely fragile. But his family refused to let this diagnosis stop him from finding joy in his journey. Nathan has even started a TikTok account and is a source of inspiration for thousands of people. Nathan doesn't let himself be defined by his disability. Instead, he lives every day like it's the best day ever. This family's unbreakable spirit is an excellent example of courage, gratitude, hope, and perseverance. In this episode, Rachel shares wonderful advice on how to face the challenges life can throw at you. She talks about finding the courage to accept the things you cannot change, balancing a careful life with an adventurous one, helping your child heal, and finding community when challenges get too overwhelming. Rachel also shares great advice on educating our children and addressing those with disabilities to promote curiosity instead of avoidance. Her family went from being the ones asking the questions to becoming advocates and helpers for others with a disability, and Rachel is now a Parent Consultant at the Utah Parent Center (a country-wide resource designed to help parents navigate disabilities). Rachel's family, especially her son Nathan, is a true testament to what it is like to have a brave heart while dealing with a difficult medical challenge like Brittle Bones Disease. Key Takeaways with Rachel Glad How to keep a positive attitude through life's hardest challenges. The power of gratitude and appreciation for what we do have in life. Finding the courage to accept the things you cannot change. Strategies for finding community in support groups such as churches, charities, and other families. Educating children on how to ask questions and address someone in a wheelchair or with a disability. Becoming an ambassador and giving back to the community that helped you. Remembering that your child can also teach you a lot of lessons on resilience, gratitude, and strength. Filling your own cup as a caregiver, so that you have more to give to others. Nathan's formula to feeling better: Be grateful for what you have Focus on what you can do Serve others in whatever way you can Believe that today will be the best day ever Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/44. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

This week felt like the perfect time to share my sincere thanks and gratitude to everyone who has been a part of the podcast. It's been such a wild ride since I recorded the first episode. I've had the pleasure of speaking with so many amazing human beings, and it fills my cup to hear their stories and nuggets of truth and to have the privilege to share them with you. In this episode, I wanted to talk about how gratitude is the key to unlocking joy in your life. And if we build our "joy muscles," we'll be better prepared when we need to do the hard things, which will help cultivate our ability to discover joy more abundantly. One last thing: if this show resonates with you and has been helpful in any way, I'd love to hear from you. Reviews mean everything in the podcast world, so I will send a gift to the first 10 people who leave a review of this episode. You'll have your choice of a Starbucks gift card or a Mattea's Joy t-shirt. Simply send a screenshot of your review with your information to jamie@matteasjoy.org. Thank you, and have a joyous Thanksgiving! Key Takeaways with Jamie Freedlund The power of sharing your story and the ripple effect that it has with others who hear it. If we create systems to build our “joy muscles'', that practice helps to prepare us for when we need to do hard things. The joy that you'll discover by creating a gratitude journal. The importance of doing things that you enjoy and creating more fun in your life. How you support the podcast with an honest review and via Patreon and the gifts that are available to the first 10 reviewers. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/43. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Becoming a caregiver is typically not a journey you ease into: much like the poem "Welcome To Holland" reminds us, it's often like suddenly landing in rainy Holland when you set off to vacation in sunny Italy. "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." And since November was recently proclaimed National Family Caregivers Month, I thought it was only fitting to invite Kim Kane to be my guest on today's episode. Kim is a mom to five children and walks beside her daughter Erin on her medical journey; she also cares for her mother with Alzheimer's. Kim brings a beautiful perspective of what it means to be a caregiver, how it affects your life with some great insights. Erin, who is now 15 years old, experienced a Hypoxic Ischemic Event which occurs when the brain experiences a decrease in oxygen or blood flow in the first week of her life. As Kim navigates life caring for a child with cerebral palsy and visual impairments, she's truly learned to not sweat the small things and make the best of what is. She reminds us that "every journey is easier with the right guides" and that by putting your faith in doctors and God, your journey can become a slightly lighter one. She also shares great advice on making hard and painful decisions when selecting surgeries or medical interventions for your children. And she reminds us to empower ourselves as caregivers; by remembering to fill our cups so that we have more to give out to others. The life of a caregiver can feel lonely, especially when you feel like you've "landed" there abruptly with no map or guidance. By reaching out to the right community and taking one step at a time, you'll be less likely to miss the joys that can be found along the way. Key Takeaways with Kim Kane Recognizing the love and sacrifice of caregivers providing crucial care to loved ones. How being a caregiver affects life as an individual, partner, and parent. Putting your faith in therapists and God during life's hardest challenges. Advice on making hard decisions regarding your child's medical interventions. Reminding ourselves to appreciate every day as a gift. How to “fill your cup” as a caregiver in order to have more to give to others. Remembering to celebrate the small wins The power and importance of reaching out to others and finding a community. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/42. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

As a mom who has had a sick child in the NICU, and later in the follow-up clinic, I cannot imagine how different our journey would have been if I had not received the help and care that I did from Mattea's medical team. Being in the NICU with your child can be an extremely scary experience and their support makes a world of a difference. It's my pleasure to introduce you to the doctors that completely changed my experience, Dr. Bree Andrews and Dr. Joanne Lagatta. These wonderful ladies are training the next generation of “helpers” and I'm so grateful to have them talk about what caregivers can expect from their time in the NICU and follow-up clinic. And most importantly, how everyone in the hospital has the power to “help the helpers”. Even in situations where help is not directly offered to you: all you have to do is ask. Dr. Bree Andrews is a neonatologist and the Chief Wellness and Vitality Officer for University of Chicago Medicine. Her area of expertise is NICU follow-ups, where she helps families as patients head home and navigate life after the NICU. Dr. Joanne Lagatta is a neonatologist with a Master's Degree in Health Services Research. She especially enjoys her role in the NICU advocating for patients and families who are trying to coordinate plans between multiple healthcare providers and transitioning home from the NICU. Today, they're sharing their best advice on how to feel a little more confident as a NICU caregiver, including advice for parents that don't feel engaged with their medical team. They touch on topics like emotional depletion, being overwhelmed at the hospital, and speaking your fears out loud as a family. They remind us of the power of reaching out to other parents going through a similar journey, as well as sharing your accomplishments as a parent, no matter how small. These ladies made my experience in the hospital feel much less scary, and I hope today's episode leaves you feeling a little more confident in your journey as a helper. Key Takeaways with Dr. Bree Andrews and Dr. Joanne Lagatta Navigating life in the NICU and follow-up clinics as a caregiver to a sick child. How everyone in the hospital is a helper, and how to ask for help if it is not directly offered to you. Transitioning home from the NICU and finding a “new normal”. Advice for parents that don't feel engaged with their medical team. A simple reminder that medical care practitioners can't read your mind and it's okay to talk about your worries to show doctors your areas of concern. Finding a child life expert and how they can help you through this journey. The importance of reaching out to other parents, finding community, and celebrating the small wins. How the PreeMe+You app is helping parents be more active at the bedside. Dealing with emotional depletion and making space for your feelings. Being ready to see the good side, even when things are not going well. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/41. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

When tragedy strikes, it's normal to want to turn inwards and shut out the rest of the world. But while focusing on the challenge ahead is important, it is also important to remember to stay open to receiving medical and emotional support to care packages… and even unexpected friendships. When Mattea was in the NICU, and I was in the thick of adapting to this life-changing event, Joann Martyn came into my life. Her baby boy, Theo, was also in the NICU, but it was her life that had truly been at risk when a severe and rare form of preeclampsia (a hypertension disorder) threatened to take it. Joann is a lifelong friend of mine and a true source of inspiration. I couldn't be happier to share her best advice on, as she puts it, “finding the magic in the mundane.” She is not only surviving the challenges life throws at us but also growing through them and thriving. Having survived a series of five brain stem strokes which have a 97% mortality rate, she is living proof of this. Since we met, she's worked her way up to being the Director of Online Learning at DePaul University, where she helps her students navigate the world in really beautiful ways. And her “baby” boy, once considered a micro-preemie, is now a 5 '11 happy and healthy 13-year-old teenager. Life has thrown every imaginable challenge at her, but it's how she has mastered being present in her day-to-day life, accepting life as it happens, serving others, and letting others serve you in times of need that makes her a true force to be reckoned with. You'll hear Joann's best advice on navigating life at the hospital/NICU (for yourself or your children), finding hope and happiness through challenging times and giving yourself permission to do what you enjoy doing most. There's a good chance this episode will give you the best kind of goosebumps, and I hope it lifts you up and inspires you whenever you need a boost. Key Takeaways with Joann Martyn How the hardest days of your life can leave you with important lifelong lessons, and even friendships. Tips for navigating life in the NICU, especially while holding a full-time job or parenting other children. Letting go of birth plans and expectations through pregnancy complications. The importance of opening yourself up to receiving help when needed, and how it can teach you to serve others even better. How to accept each day as it comes, and be grateful and present when possible. Advice on giving yourself permission to do what you enjoy most, from someone who has had several near-death experiences. Romanticizing your life to make the best out of your ordinary daily routines. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/40. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

As a parent of a child facing a medical challenge, it can be tempting to try to put on as many hats as possible: mom/dad, caregiver, nurse, and sometimes even a medical expert. We often hear doctors ask patients not to Google a diagnosis, but seeking out as much information as possible in the face of a challenge can feel like regaining some control. However, the problem is that carrying all this information can take parents away from their primary role of just being parents. That's why Family-Centered Care, an approach that aims to help parents feel supported and empowered throughout their family's medical journey, is so important. I'm delighted to introduce you to Jenny Berchtold. Jenny is a certified Child Life Specialist with a master's degree in Child Development and a specialization in infancy. Jenny has worked in the NICU but has since taken her passion to the Erikson Institute, a graduate school in child development, and is doing what she loves most. She is preparing the next generation of Child Life Specialists to advocate for kids in the NICU and amplify their voices when they don't have one. But her experience doesn't end there: Jenny's youngest son, Evan, faced his own challenge with the discovery of a “dot” on his cheek, which proved to be an extremely rare and aggressive tumor. Thankfully, it has since been successfully surgically removed and is being carefully monitored. She knows firsthand the challenges of balancing your child's medical needs with “just” being present as a parent. Jenny shares her best advice with us: find a medical team that you trust wholeheartedly so you can let go of some “control” and always know that the medical teams and hospital staff are there to help you so that you can be present for your kiddo. Her advice is empowering, and I hope you find as much guidance and comfort in her words as I did today. Key Takeaways with Jenny Berchtold What Family-Centered Care is and why Jenny is so passionate about it. Understanding that the medical teams are only a small part of a family's life journey and that they're only there to help make a positive impact. How it's okay to let go of some control and trust your child's medical team. When hospital staff ask parents how they're doing, they're actually hoping for and expecting an honest answer as they only want to help. How much better it is for parents to prepare to ask the right questions instead of researching everything on their own. How removing the word “just” from those little requests that we all make everyday can make a huge difference. The importance of letting go of guilt as a parent when you feel like you can't do it all and that it's okay to ask for help. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/39. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

When a parent drops off their child at daycare, getting a phone call during the day is rarely a good thing. And for Tim Eaker, it was life-changing. On Valentine's Day in 2014, Tim received a call from daycare that his son could not breathe and was headed to the hospital in an ambulance. After a few weeks in the ICU, Piersen's medical team broke the news that his son Piersen had been shaken at the daycare, which caused massive brain damage and ultimately led to a cerebral palsy diagnosis. This event caused Piersen's brain to go without oxygen for roughly 7 minutes, leading to all his current disabilities that require around-the-clock care. I'm so thankful that Tim was generous enough with his time to share his perspective as a dad walking beside his son with disabilities originating from abuse and to spread awareness about Shaken Baby Syndrome and the enormous impact it can have on a child's life. Tim has been coaching and mentoring for 25 years, and his two sons give him the motivation and willingness to share his story with the hope that he can make the path a little easier for those walking a similar journey. Tim reminds us of how important it is to take a break, step back in moments of need, be kind to each other, and live in the moment. And above all else, to have faith and stay #PiersenStrong. Key Takeaways with Tim Eaker What Shaken Baby Syndrome is and the impact it's had on his family. How to deal and cope with challenges caused by actions out of our control. The challenges of being a single parent to a child with severe disabilities. The importance of staying present, letting go of the ‘what ifs'. How faith can guide and help you through difficult moments. The impact that Piersen is having on others in a world where true kindness is getting harder to find. Navigating life after abuse, and why he's so passionate about spreading awareness. Tim's mindset on making an impact for today instead of dwelling on the past. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/38. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Announcing a pregnancy and bringing a baby into the world can be one of life's most joyful experiences. Yet, according to the CDC, 1 in 5 couples struggle with infertility, and it's a topic many people don't feel comfortable talking about when they're in the middle of it. That's why I invited Laura Andersen to share her story with us today. Laura and her husband struggled with infertility for four years. After years of feeling like they were living alone on an island where they were the only ones going through it, everything changed when they welcomed their beautiful and healthy baby triplets into the world. Her children are 11 years old now, and she can't remember a life without them. Laura shares the highs and (mostly) lows of infertility, how to find hope and keep going, and how her story has helped couples feel seen and less alone. But this wasn't the only curveball life had in store for Laura: just 6 months ago, she was diagnosed with facial cancer. Thankfully, it was a form of cancer that could be treated with multiple surgeries. And even better, Laura is officially cancer-free today! You'll hear how much stronger she felt once she started sharing her story, how she feels compelled to talk about it now and how to guide your children through difficult journeys with you. Laura also reminds us that your journey doesn't have to be a constant state of gloom just because it's difficult, and that you'll only feel alone on an island if you don't invite the people you love to be with you. Key Takeaways with Laura Andersen Dealing with the feeling of loneliness that comes with infertility. How sharing your journey with others can help you feel supported and empowered. How small acts of kindness can mean the world to someone going through a tough time. Laura's advice on how to navigate a cancer diagnosis and embrace/welcome all your feelings. How to share a difficult diagnosis with family members and children and how to help them feel supported through your journey. How the power of journaling helped Laura through those difficult times. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/37. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Navigating infant or pregnancy loss is confusing, heartbreaking, and can feel very lonely. So many things become difficult, including simple questions like “How many kids do you have?” Since October is Pregnancy and Infant Loss Awareness Month, I wanted to invite a guest that would be able to help the many families out there who may be walking through life after the loss of a child. I'm thrilled to introduce you to Joy Harris. Joy is a serial entrepreneur and motivational speaker who tragically lost her son, Darien, to stillbirth nearly 20 years ago. Since then, she has written a book (and companion journal) titled Missed Baby Steps: an extremely helpful resource for families that are missing all those firsts with the child they dreamed of. Joy shares some excellent advice on navigating the different phases of the grieving journey, connecting with other parents going through similar journeys, and even supporting your other children through the grief. She reminds us to validate our feelings: whether you've lost an infant or had an early miscarriage, your feelings of loss and grief are real and important to process. Most importantly, Joy reminds us that it is possible to find meaning and joy after experiencing loss. Key Takeaways with Joy Harris Navigating life after loss of an infant during or after pregnancy. Joy's advice for anyone that would like to support parents dealing with loss. The impact that can be made by connecting with other parents who experienced a similar loss to yours. The challenge of watching your other children manage grief after loss of a sibling. How moms deal with difficult questions like “How many children do you have?” The importance of honoring the memories and life of a lost child. Understanding that it is a family affair (everyone experiences the loss in one way or another). How Joy turned a tragic journey into one with meaning and purpose. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/36. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

“Our body is made up of water, and music vibrates us.” - Paul Cardall If you've ever had the perfect song start playing on the radio when you needed it most, listened to a song that made you cry, or felt nostalgic as music carried you back in time, then you know just how powerful music can be. I'm beyond delighted to welcome Paul Cardall to the show to have him share his insights on how music can help us heal in times of grief or sorrow. Paul has been endorsed as one of the world's finest pianists and is an award-winning musician, composer, and producer. He has held 11 number one Billboard albums and is one of the most listened to artists of modern time with 30 million monthly listeners. His work with music goes so much deeper than what you initially hear on the surface: Paul was born with congenital heart disease and half of a functioning heart. He has not only walked in the shoes of a child managing chronic illness and undergoing a transplant, but has also extensively witnessed the stories that take place within the walls of a children's hospital. Paul shares beautiful stories of resilience, grief, loss, and hope (some of which inspired his work, like Gracie's Theme). His passion for music and faith has not only helped guide him through his journey but has also touched many people's lives. His partnership with the Ryan Seacrest Foundation helps children's hospitals nationwide embrace music therapy and inspires us to work through our grief and help others do the same. I have no doubt that you'll love his advice on how to help children define themselves outside of their illness, how music and creativity have their own healing powers, and how we can all find joy in our journey by being present and expressing gratitude. Key Takeaways with Paul Cardall Paul's advice on managing and working through grief. The true meaning of having a fellowship of people that you can confide in. How Paul navigated life with a chronic illness, both as a child & as a parent. How to heal through music and creativity, both physically & emotionally. Helping children define themselves outside their illness and the negative side effects of being called “a miracle”. That it's okay to accept help from your community in times of need whether it's from church, hospitals or your neighbors. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/35. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

We're often told that to be “tough,” we have to push through our pain, show no signs of distress, and simply persevere. But Steve Magness' newest book, Do Hard Things, challenges that definition and outlines a much more beautiful and useful way to understand what it truly means to “be tough.” And since such a huge aspect of finding joy in our journey is to learn how to embrace the less pleasant moments in our lives, I'm thrilled to have Steve on the podcast to help families dealing with challenging circumstances and slowly build their resilience. Steve Magness is a world-renowned expert on performance and an acclaimed writer. He has served as an executive coach in various sectors and has been a consultant for professional sports teams, including some of the top teams in the NBA. His writings can be found in publications such as Sports Illustrated and Men's Health. He has shared his expertise on performance in features in the New Yorker, Wall Street Journal, Business Insider, ESPN The Magazine, and many more. In our conversation, Steve talks about what toughness really is, but also what it isn't. He outlines his Four Pillars of Toughness and shares beautiful nuggets of information you can apply to your life today to make navigating life's ups and downs a little easier. You'll also learn how to feel in control in the face of challenges, the power of routines, listening to your body, responding instead of reacting, transcending into discomfort, and so much more. Key Takeaways with Steve Magness What being “tough” truly means and how we can become more resilient. Steve's advice for families dealing with hard circumstances. The Four Pillars of Toughness: Ditching the facade and embracing reality, Listening to your body and emotions, Responding instead of reacting, and Transcending to your discomfort. How to discover what feelings you are experiencing with a Visual Guide To Human Emotions. Learn more about Post Traumatic Growth. Facing life with an “Explorer Mindset” and embracing the journey because you never know where it will take you. Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/34. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!

Today's episode is a very tender story about loss, and while it might tug at your heartstrings, it's also an incredibly inspiring story about finding joy and hope within grief. Only three short days after taking her very first child home, Heather Earl noticed a devastating rash on her little newborn, Shealyn. After rushing to the doctor, getting redirected to the children's ER, and having to wait two agonizing weeks for a diagnosis, her worst nightmare came true. Shealyn was diagnosed with a rare condition called Epidermolysis Bullosa, which causes fragile, blistering skin and can be fatal. Babies with this condition have skin “as fragile as butterfly wings,” and a simple dressing change can take hours. Only 5 short months later, Shealyn sadly passed away on Thanksgiving day. After Shealyn's passing, Heather gave birth to three more babies; her third child, Shelby, was tragically born with the same condition and passed at 6 months old. Through so much heartbreak and grief, Heather's story has turned into an inspiring tale of the power of faith, hope, and acts of service. I'm so delighted to have Heather on the show as she shares empowering advice on navigating grief, processing emotional triggers, and adapting to a “new normal.” By giving back through acts of kindness, community service, and starting Pajama Pages-a nonprofit for children in hospitals-Heather found an incredibly healthy channel for her grief which has become a source of joy for everyone whose life she has touched. I hope you'll get a lot of value out of this episode and discover the power of being present, choosing joy, finding abundance, and living in a state of empathy and understanding, even in times of hardship. Key Takeaways with Heather Earl The importance of having a support system, whether that is a spouse, parent, or friend. Leaning on faith to stay hopeful and strong in order to advocate for your children. How to adapt to the “new normal” of everyday life with a sick child. Processing emotional triggers and learning to navigate them. Parenting through times of grief and emotional distress. Healing through acts of kindness/service to others. Living with an empathy state of mind (choosing joy over anger) Show Notes: Get Full Access to the Show Notes by visiting: MatteasJoy.org/33. Rate & Review If you enjoyed today's episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, 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!