Joy In The Journey: Recent Episodes
Jamie Freedlund
Joy In The Journey is a podcast dedicated to supporting families with critically ill kids. Life brings unexpected circumstances, but choosing joy makes all the difference.
Your host, Jamie Freedlund, knows this better than anyone. Her world changed when her daughter, Mattea Joy, was born with several severe medical complications.
Jamie and her husband were given a very small chance that Mattea would survive at birth, but were able to share nine and a half wonderful months with her that they didn't expect to have. This experience led to a deep level of gratitude, shifting Jamie’s life as a result, and allowing her to discover joy in every day—even the tough ones.
Most of Mattea’s life was spent in the hospital. It was there that Jamie came to understand what it means to be a parent of a critically ill child and the challenges that go with it. Through this podcast, she hopes to help other families going through similar struggles. Join us on a journey of connection and learning through beautiful stories, expert content, and finding more joy in the everyday!
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.
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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.
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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.
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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.
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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.
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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.
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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.
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“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.
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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.
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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.
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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.
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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! 😍
Key Takeaways with Taes Leavitt
- How Taes creates safe spaces for children and parents to address big feelings.
- Empowering kids to move confidently through their biggest feelings.
- Identifying the difficult feelings (guilt, shame, sadness) that may be holding you back and how to deal with them.
- How mindfulness practices can help boost resilience and reduce anxiety.
- Ideas for strengthening relationships between children and caregivers.
- Tools to help kids navigate difficult journeys.
- How unaddressed feelings can lead to disconnection.
- Strategies to help children regulate before medical treatments.
- Finding new roles in a community for children who feel like they don’t fit in, or are getting bullied.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/53.
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.
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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.
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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.
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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.
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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 no more than a few belongings, 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 go back to their family. What was supposed to be a month's stay ended up turning into 12 years.
The ability to introduce Banah and her little girl 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, ear, and spine, which in Rama’s case required jaw surgery and a few other interventions. 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.
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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.
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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.
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“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!
Is it possible to experience incredible joy through moments of extreme pain?
Jennifer Trepanier has dedicated her life’s work to bringing happiness into the lives of those going through difficult health journeys.
But she is no stranger to hardship herself: having struggled with a rare autoimmune condition her entire life and even facing the prospect of death, Jennifer joined her personal experience with a Masters Degree in psychophysiology (the study of the body and mind) and a Mastery Method Coach Certification to teach others how to navigate their pain.
Most importantly, Jennifer holds her life motto (“Within darkness, there is light, and joy heals”) close to her heart with everything she does. As part of her mission to help others find joy in their journey she founded Pile of Puppies (a non-profit which brings joy to chronically ill children), and Wells of Wisdom (teaching clients to release unconscious blocks).
Today, she’s teaching us how to embrace and welcome pain, support those going through difficulties, and how best to advocate for our children.
Most importantly, she shares the difference between “belonging” vs “fitting in”, and how sharing our journeys and being vulnerable makes space for deep connection.
Jennifer is also launching a book on her “four pillars”, which will become available in 2023, that touches on the topics of death, wisdom within illness, embracing sensuality, and motherhood.
I’m thrilled to be back for season 2 of the podcast and I hope you’ll continue to get a lot of value and inspiration from the guests we have lined up who are sharing they joy they have found on their journey. Enjoy!
Key Takeaways with Jennifer Trepanier
- Teaching children and adults how to express and embrace their pain in multiple ways (writing, drawing, sharing their story etc…)
- How to show up for sick loved ones and be a source of positive energy.
- The difference between belonging vs just fitting in and learning not to hide our illnesses.
- Discovering our ability to feel extremely positive feelings (like joy and laughter) alongside very difficult ones like pain or our immortality.
- How connecting with your body and mind can help you get out of less optimal patterns.
- Surrendering to “what is” because we never know when our last moments will be.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/32.
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’re in the thick of a hospital journey or visit, even the simplest tasks can leave you feeling disheartened. Suddenly, finding parking, getting food, asking questions, and preparing for the next visit can become overwhelming and daunting.
But there are extraordinary professionals out there whose entire career revolves around guiding, comforting, and empowering parents and children during their hospital visits and stays. My guest today, Amy Carter, is one of those amazing people.
Amy Carter has been a Child Life Specialist for almost 24 years and works closely with an incredible team at the UChicago Medicine Comer Children’s Hospital. Their ultimate goal is to support children and families in all areas of the medical center, from clinic visits to procedure areas, emergency interventions, and in-patient stays like the NICU.
They do everything in their power to reduce the anxiety surrounding the time spent in the hospital and care for the emotional well-being of both the caregivers and the children.
Today, she’s sharing with us some wonderful advice to empower families in their hospital journey: from teaching children what to expect from their procedures in developmentally appropriate ways to teaching parents how to play a more active role in their child’s care.
Amy also shares fantastic ways to prepare for foreseen and unforeseen hospital visits, some great tricks to make your stay more pleasant, and how to help loved ones going through those journeys.
Whether your hospital has Child Life Specialists that you can ask for, or you have to seek this guidance more directly, this episode is a great resource to share with anyone who may need it.
Key Takeaways with Amy Carter
- Tips on reducing anxiety and maintaining your emotional wellbeing during hospital visits.
- Developmentally appropriate ways to prepare children for visits or procedures.
- How to ask the right questions and get more involved in your child’s care.
- Amy’s advice for preparing for both foreseen and unforeseen hospital trips.
- The different professionals you’ll run into during your hospital visit and their roles.
- Insider tips for families at Comer Children’s Hospital for parking and food options.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/31.
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!
Walking into the NICU world for the very first time can feel scary and overwhelming. But with the right support, a little bit of hope, and some expert advice it can turn into a space where you and your family feel heard, supported, and safe.
If you or anyone you know is navigating life in the NICU, I hope you’ll share this special episode with them.
We brought together a group of wonderful professionals to form our NICU Professional Panel. They address common NICU concerns submitted by our online communities and share encouraging and heartwarming advice that can truly make a difference in your journey.
It’s my pleasure to introduce you to today’s NICU Professional Panel:
- Yaya Ren is my co-host and a medical anthropologist and a social entrepreneur who helps create technologies that promote meaningful in-person interactions for parents in the NICU (PreeMe +You).
- Kirsten Utley has been a registered nurse for 11 years, 7 of which in the NICU. She loves encouraging parents and watching NICU babies grow and thrive.
- Kari DeWolf is a certified speech language pathologist. She is passionate about helping NICU parents learn all the necessary skills in order to help their babies develop (both in the hospital and, eventually, in their own home).
- Meredith Mansch is a licensed physical therapist and certified neonatal touch & massage therapist. She uses her unique & compassionate clinical expertise to support infants and families in NICU.
Our conversation today gives parents insightful background, expertise, lessons learned, and ideas to take back to their own medical team. (This should not replace their own team’s advice, similar to what PreeMe +You was designed to do).
Key Takeaways with NICU Professional Panel
- The joy these professionals experience working in the NICU which parents can look forward to; like learning to care for your baby, bonding, and experiencing the baby’s firsts.
- What an overnight stay for a baby in the NICU looks like from an NICU night-shift nurse’s perspective.
- Learn more about the best physical care for preemies including “voice touch”, skin-to-skin and “hand hugs”.
- How to prepare for a premature baby: securing your support, preparing meals/groceries ahead of time, getting enough sleep, kangaroo care, and more.
- Resetting expectations with a premature baby and creating your own timeline with appropriate milestones.
- The difference between “Real Age” and “Expected Age” with preemies.
- What sleep training, breastfeeding, and introducing solids may look like.
- The types of questions to open up a conversation with your baby's medical team such as: “What can I do today to developmentally support my baby?”
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/30.
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 2005, Dr. Michele Arnold went through a very traumatic loss. Before delivering her daughter Camille, she was told there was no heartbeat at her final OB scan. A few days later, she delivered her stillborn baby girl.
But even though life threw one of the toughest challenges at her, Michele has found ways to create something beautiful from grief. She shares her story openly and with a lot of vulnerability, and I’m so thankful to have her on today’s podcast as she offers so much value that can help others find joy in their journey.
Dr. Michele Arnold is a Physical Medicine and Rehabilitation (PM&R) physician. In our conversation, Michele guides us through her experience before, during, and after delivering Camille. She talks about the importance of seeking support and community during challenges like her own and gives great tips on how to process feelings of grief.
You’ll also hear about the “four challenges” she had to overcome: feelings of guilt, feeling like a bad parent, fear for the wellbeing of her other child, and the temporary loss of faith she experienced.
Not only is her story beautiful and inspiring, but it is also a reminder of how real postpartum depression (or baby blues) can be. If you find value in this episode, please share it with a mom or parent who may need to hear this advice, as it could truly make them feel seen, heard, understood, and loved.
Key Takeaways with Michele Arnold
- Michele’s advice for parents who have experienced a stillbirth (before, during, and after)
- How to deal with “mom guilt” and feeling like you didn’t or can’t do enough as a parent.
- How to overcome a temporary loss of faith.
- Two antidotes that can help with grief and depression: community and the right support.
- Signs of postpartum depression (baby blues) to look out for and who to reach out to for help.
- How to find hope again after experiencing a loss, and truly make the best of what life has to offer.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/29.
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!
NICU doctors and nurses work tirelessly and passionately to keep babies safe and their families informed. But the experience and uncertainty that comes with it is never easy.
Thankfully, there are truly amazing nurses out there that help soften the blow of the experience. And today’s guest is Kelley Thompson, and she is a ray of sunshine to anyone who has had the pleasure of meeting her.
Kelley has been a neonatal nurse for the past 10 years and has experienced the NICU on a much more personal level when her own little girl, Isabella, had to be airlifted to a different hospital shortly after being born and spent 15 days in the NICU.
She talks about how her experiences motivate her to help others through the emotional roller coaster that is the NICU. She also shares some great advice on how to manage emotions in tender moments, dealing with the feelings of grief after a diagnosis, and how to make the most of what life sends our way.
Kelley is helping other parents find joy in their journey by being able to relate, encourage, and empathize during NICU stays, and I think you’ll truly get a lot of value from listening to her story.
Key Takeaways with Kelley Thompson
- How a mother’s touch has an uncanny ability to soothe their baby after the delivery.
- How Kelley’s personal experience helps her to interact with families and understand the deep emotions that parents in the NICU experience.
- Finding a community and taking breaks from the NICU as self-care with resources such as Ronald McDonald House Charities.
- Don’t be afraid to ask the nurses if you can be involved by your child’s bedside. Nurses understand the value and will help to make it happen.
- The importance of taking it one day (or even one hour) at a time during a NICU stay.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/28.
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 an illness with a loved one is a journey that requires perseverance, strength, and community. But when you add a hospitalization away from home to the mix, it can truly feel unfathomable. I can certainly relate to this after my own personal experience with Mattea.
Thankfully, I had the honor of witnessing firsthand the love, hope, and community that lives within the walls of the Ronald McDonald Houses.
It's my privilege to introduce you to Ronald McDonald House Charities' Chicagoland and Northwest Indiana CEO, Holly Buckendahl. For over 25 years as a non-profit leader, the last 14 of which with RMHC, she's committed herself to improving the health and wellness of families in need.
The RMHC supports families by providing a home away from home during hospitalizations, community, family rooms in hospitals, mobile medical healthcare for underprivileged children, and so much more.
Enjoy this conversation as you'll hear about the incredible work Holly and the RMHC teams do worldwide. You'll learn about the best ways to get involved and receive advice from an experienced social worker on the best ways to provide emotional support for families in your community that are going through hardships.
Don't underestimate how much rounding up your bill at Mcdonald's by a few cents can help. Last year Mcdonald's raised over $2 million for the RMHC in round-up change. A small donation can make a world of a difference.
Key Takeaways with Holly Buckendahl
- How the Ronald McDonald House Charities (RMHC) work to support families with hospitalized loved ones.
- What you can do to emotionally support families in your community going through hardships.
- Discover the role of McDonalds in raising funds and supporting the RMHC.
- How spreading awareness of the existence of RMHC worldwide could greatly impact a family in need.
- Getting involved with the charities.
- The empowering force of community, especially through hospitalizations.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/27.
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.
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How can we take the traumatic challenges that life presents us, like a difficult diagnosis or the loss of a child, and create something beautiful?
Today's guest is Jessica Lindberg, and her story is a lovely example of what is possible when you let your passion be your guide.
Jessica is a mom to four beautiful boys (three living) who tragically lost her oldest son Ethan to congenital heart disease when he was only seven. And if that experience wasn't enough, she is currently navigating the journey of a rare muscular dystrophy diagnosis with her youngest boy.
Having firsthand knowledge of how difficult those challenges are, she knew she wanted to help others. This experience led her to create The Heart Strong Collective, a non-profit that encourages people to be resilient and supports families impacted by congenital heart disease and rare muscular dystrophy.
Today, she shares how you can live fully and freely, even amidst those struggles. She shows us how we can turn traumatic events such as lengthy hospitalizations into moments of bonding and connection. She encourages others to live "heart strong" and discover their inner strength.
Jessica also discusses the gift of everyday life, finding community through loneliness, and reminds us that we are much more capable than we think we are.
Key Takeaways with Jessica Lindberg
- How to harness the challenges in our life and create something beautiful from them.
- The importance of community and fostering connections with your family during those isolating experiences of having a child in the hospital.
- How to stay present and find joy in everyday life.
- That there are several ways to help families battling with an illness, such as financial, research, alternative therapies and more.
- How to show up consistently for a family you love that is going through hardship, rather than just during the acute phase of the illness.
- The main pillars of the Ethan Lindberg Foundation: family support, research, and music therapy.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/26.
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.
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It’s perfectly natural for people to take things for granted from time to time. But when you’re raising a child who is completely blind, today’s guest will tell you that you definitely gain a new perspective and truly see the beauty in everything. Joining me for this inspiring conversation is Nicole Carr. Nicole is a nurse and a beautiful mom to 3 kiddos, Nora, Aubrey, and Mac. Now that she has seen the challenges firsthand, she is driven to change the world on what is possible for the visually impaired.
When Mac was born, both of his lungs collapsed, and he was rushed to the NICU. A few weeks later, Nicole and her husband, Chris, noticed that something wasn’t right. His eye movements seemed off, and he would often be startled when they picked him up.
Soon afterward, Mac was diagnosed with optic nerve hypoplasia. The diagnosis was anything but definitive, and the Carr family literally had to wait and see what type of vision problems their son would have.
She shares many wonderful and empowering messages about how we are only limited by the assumptions and blind spots that we create for ourselves and others.
Nicole and her husband have created an amazing nonprofit called Blind Spot, which helps other families with visually impaired kids with the support they need to dream big and set their sights on accomplishing their goals. She is such a lovely human being and I’m so grateful to be able to share her journey with you.
Key Takeaways with Nicole Carr
- How Nicole’s instincts kicked in during her pregnancy that something wasn’t right, even though the tests were always clear.
- That 85% of what a child learns by the age of 5 is with their vision.
- 75% of the population that is blind is unemployed, and roughly 10% get a college degree.
- Even as a nurse, it’s difficult to understand what the loss of normal life is for a family unless you go through it yourself.
- We’re all human beings with stuff going on at home, and we need to understand that and help each other, especially in the workplace.
- If we allow ourselves to be vulnerable, the people around us are more likely to reciprocate.
- How people tend to make assumptions or put limitations on ourselves and others to rationalize why something can’t be done, when it absolutely can be done.
- The amazing things that the Blind Spot nonprofit is doing to help other families educate those with disabilities.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/25.
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.
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Today’s episode is a story of hope, healing, and unfortunately heartbreak.
My guest today is Joel Clausen. While this story might be an emotional and difficult one to hear, I hope you’ll get a ton of value as he shares his baby boy’s journey and how their tragedy turned into life saving legislation.
When their youngest son, Bryce, was only 6 months old, Joel and his wife Andrea noticed he was experiencing some behavioral changes and developmental delays. His doctors explained that since he had been born a few weeks earlier than expected, these delays were normal.
But Joel and Andrea still had a nagging feeling that something wasn’t right. They trusted their parental instincts and persisted on getting a diagnosis.
On the day Bryce turned 9 months old, they received the devastating diagnosis that no parent would ever want to receive: Bryce was diagnosed with Krabbe Disease, an extremely rare and destructive genetic disorder that affects brain nerve cells and the nervous system. Babies with this disorder generally do not survive past the age of two.
Without knowing how much longer they’d have with their baby boy, Andrea, Joel, and their oldest son Levy set out on an adventure they called Bryce’s Greatest Hits. They were determined to let Bryce experience as much joy as possible during his short life.
They also set into action what would become the fastest bill to be signed in Indiana history, Bryce’s Bill, a legislation which added three new diseases to newborn genetic screening tests.
Joel shares with us the monumental role the community around them played after the diagnosis, how to find hope in the face of heartbreak, and how to make the most out of this adventure we call life.
Key Takeaways with Joel Clausen
- How difficult it is to receive a diagnosis for a disease that you’ve never heard about before.
- The experiences that they were able to share during Bryce’s last 5 months on their “Greatest Hits” tour.
- Always trust your instincts as a parent and be the voice for your children.
- How a community can support your family through hardship.
- The power of social media, spreading awareness, and giving back.
- The importance of genetic screen testing on newborns and how it can save lives.
- How difficult it is to find funding for cures of rare genetic disorders.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/24.
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.
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The journey doesn’t end when your child graduates from the NICU. And when a parent is told that their child has been diagnosed with cerebral palsy, finding an education program that suits their needs is just one step on their educational path.
My guest today, Kristi Herschberger, is no stranger to children with special needs; she has dedicated herself to teaching special education for 14 years and cares for her daughter, Karly, who has cerebral palsy.
In this episode, she shares the importance of seeking out unique educational paths for our children, and how a diagnosis can be a crucial first step towards getting the tools your child needs to thrive.
She also explains what Individualized Education Programs (IEPs) are, and shows us how to seek them out for our kids. She also shares important tools on advocating for our children’s needs.
Kristi talks about her family’s journey with adoption and dives into the complexities and joys of being a transracial family, and tells her story of raising her two gorgeous little girls, Karly and Katelyn.
Key Takeaways with Kristi Herschberger
- How feeding a baby with bad reflux issues to make sure they add weight is a full-time job.
- The amount of support that moms need when adopting a baby without a proper maternity leave.
- Caring and advocating for children with special needs.
- Remembering to prioritize self-care as parents.
- How to seek out special education (IEPs) for children who need it,
- How she navigates the complexities of being a transracial family as a light-skinned parent with dark-skinned children.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/23.
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.
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Today's episode comes with a bit of a warning, as this one might tug at your heartstrings a little harder than usual. I hope you'll join me as Amanda Beedle shares her journey with her two little girls.
Amanda's daughters, Annabelle and Abigail, were both diagnosed at an early age with an extremely rare genetic disorder called Batten disease. It's so rare that, on average, only 20 children are born each year in the U.S. with this disorder.
Before Annabelle's 4th birthday, she had her first seizure. And then they noticed some coordination and language problems. In December of 2020, both of her girls were diagnosed with Batten disease.
For those that haven't heard of Batten disease, there are 13 different types. The main issue is that it causes the body to not produce an enzyme that gets rid of cellular waste. Over time, children slowly lose their ability to walk, talk and eat. There is only one treatment available, which involves injecting a synthetic enzyme directly into their brain, every 2 weeks. Even with this treatment, their life expectancy is still only 6-12 years.
Amanda shares hopeful and inspiring messages about navigating her daughters' treatments (which they will need for life), choosing joy in their journey, and the importance of community.
You can also follow their story on their Facebook page, Beedles Braving Batten.
Key Takeaways with Amanda Beedle
- How normal and peaceful her pregnancies and deliveries were, for both of her girls.
- Only 20 cases of Batten disease are diagnosed each year, and there was only a 25% chance that her second child would also be diagnosed.
- Navigating the recurring doctor appointments, treatments, and everyday care with a lighter heart, especially on the harder days.
- The importance of accepting help from your community, and how showing up in small ways can make a huge difference.
- You can only control the things within your control.
- Find ways to smile on the journey, it will all come together in the end.
- Learning to celebrate the achievements that make sense for your family, instead of the more traditional milestones.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/22.
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!
For NICU parents, watching their child graduate from the NICU feels like an enormous relief! It’s such an important milestone and deserves to be celebrated and cherished.
However, sometimes it doesn’t take long before you realize that the journey is far from over. But, if you’re surrounded by the right people, it can also be a very rewarding one filled with hope, strength, and joy. However, sometimes it doesn’t take long before you realize that the journey is far from over.
Today’s guest is Karri Friedenberger, and she is no stranger to the NICU or pregnancy-related trauma. She’s experienced several miscarriages, the birth of three pre-mature NICU babies (including twins), and navigated many years of post-NICU therapy, surgeries, treatments, and preventative medical programs.
Today, her four “babies” are healthy and happy young adults; Karri shares her story with as many parents as she can to remind them that there is hope for everyone. Her work with March of Dimes - March for Babies began in 2005, and she has been advocating for mother and baby care ever since.
In this episode, we discuss the ups and downs of the NICU journey, the post-NICU experience (including lifelong treatments), and Karri shares tips on finding support and community.
Key Takeaways with Karri Friedenberger
- How Karri mentally prepared herself for a pregnancy with twins after two miscarriages.
- The importance of sharing stories & experiences with other NICU parents who can relate to what you’re going through.
- How to navigate life post-NICU graduation with continued therapies and treatments.
- How to begin healing from pregnancy and neonatal related trauma.
- Overcoming feelings of mom guilt & other difficult emotions.
- Why she is raising awareness for mother/baby care and supporting NICU parents.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/21.
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.
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If you are a caregiver of a child with special needs, then you’ll probably relate to the feeling of being overwhelmed and never getting a break. Which begs the question: who is caring for the caregivers?
Today’s guest, Jessica Ronne, is a true warrior and inspiration: she is a wife, mother to 8 kids, author, teacher, and founder of a non-profit dedicated to providing respite breaks for special needs caregivers, The Lucas Project.
After losing her first husband to a long battle with brain cancer and suddenly becoming a young widow and mom to 4 children under the age of 6 (including a child with special needs and a newborn), she decided she had two choices: wallow in her misfortune forever, or make the best of her difficult and wonderful journey.
In this episode, Jessica shares with us the importance of finding people who can truly relate to your journey, how she met her current husband Ryan (a widower and parent like herself), how caregivers can find help and respite, and what to do in the face of isolation.
Her documentary, Unseen, will be premiering in May of 2022 and is an eye-opening project that helps illustrate the struggles of caregivers, why it matters, and what we can do to help.
Key Takeaways with Jessica Ronne
- How caregivers can seek rest and support, and why this is so important.
- What to do if you feel isolated/alone in your community.
- The reality of a day in the life of a caregiver.
- How society is failing parents of children with special needs that are dependent for life.
- Making the distinction between mothers and caregivers.
- How important it is for caregiving mothers to eventually outsource some responsibility.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/20.
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 you’re a parent with a kiddo in the NICU, wouldn’t it be amazing if there was an app on your phone that could help you understand what to expect and allow you to comfortably get answers to your questions without feeling like a burden to the medical staff?
Today’s guest is Dr. Yaya Ren, and with her partner, Dr. Bree Andrews, they have developed an amazing resource for NICU families that will create a shared experience and a connection to the team that is caring for your child.
Dr. Yaya Ren is a medical anthropologist and social entrepreneur who’s passionate about creating systems that nurture meaningful connections in healthcare. Her work has been recognized by the Sloan Foundation Award, National Science Foundation, and many more.
Her and her team have created a technology designed to make parents feel more involved and connected to their medical teams throughout their baby’s NICU journey.
It allows parents to have a shared language with doctors and breaks the journey into important trackable color stages, which can truly make a difference in identifying the progress your baby is making.
Today, she shares with us her best tips on interacting with your baby’s medical team, finding the right community and support, allowing yourself to feel your feelings, and celebrating your child’s overall progress.
She encourages us to speak up for our children’s needs, to be less harsh on ourselves, and to truly find joy in the journey.
Note: the PreeMe + You platform and app are currently only available to patients of select hospitals, but will soon be made available to the general public. If you’re interested in becoming a Beta Tester in your location, email Dr. Yaya Ren at yaya.ren@preemeandyou.com)
Key Takeaways with Yaya Ren
- How to bring words to your feelings, especially throughout your NICU journey.
- Using the wisdom obtained from a transformative experience to find a supportive community that can relate.
- Finding strength in ways you didn’t know you could.
- Connecting with your baby’s medical team, understanding their work, and being able to provide helpful input and ask important questions.
- Celebrating the progress but recognizing that the journey has no set path, and can feel like taking three steps forward and two steps back.
- How the right resources and technology can help you see the bigger picture in your child’s medical journey.
- Remembering you are not alone, even though feeling disconnected and lonely is perfectly natural.
- How to find out more about the PreeMe+You app and how it has been helping dozens of families feel more connected.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/19
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.
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One of the most painful questions for parents who have suffered from the loss of a child is, “How many kids do you have?” Not because we don’t want to share the beautiful stories of our children and their journeys, but because sometimes it can be hard to know just how much to share. In today’s episode, I am speaking to Stefanie Boyce, a national speaker, teacher, yoga instructor, and most importantly: an extraordinary mother. Stefanie has taken her story of caregiving and loss and found a way to help parents find beauty and joy in the journey.
When her oldest son Jayden was diagnosed with Sanfilippo Syndrome, at just 3 years old, Stefanie and her husband felt their whole world shift from underneath them. Shortly after, they received the devastating news that their newborn baby girl, Brooklyn, had the same rare genetic disorder for which there is no cure.
For those that aren’t aware, children with Sanfilippo Syndrome develop until around three years old and then slowly become unable to walk, talk, and feed themselves. They shared 11 wonderful years with Jayden and 9 magical years with Brooklyn.
Stefanie and her husband welcomed a healthy baby girl (Elliotte) only three years after the diagnosis and had to navigate the difficult journey of caring for typical and terminal children at the same time.
Today, she teaches us how to find joy through the pain, cherish the present moment, and handle the complicated feelings attached to this journey.
She inspires us to feel our true feelings, ask for help when needed, embrace our fears, and move forward while honoring our pain.
Key Takeaways with Stefanie Boyce
- Navigating difficult diagnoses and how to adapt to a “new normal”.
- Caring for typical and terminal children in the same house.
- Guiding children through the loss of a sibling.
- Allowing faith to guide and inspire you through your journey.
- Choosing comfort for your terminal children over lengthening their days on Earth.
- Finding meaning and purpose throughout this journey of loss
- How to navigate the “end of life” journey and learning to stay present so you only have to suffer when the time has come.
- Cultivating gratitude in what is and not being afraid of tomorrow.
- Trusting your gut and intuition as a mother, father, or caregiver.
- Advocating for non-verbal children.
- Learning how not to let fear control you.
- Finding parents that are walking the same journey, unlikely friendships that can become a source of support and a great resource.
- Dealing with feelings of guilt when you desperately need a break.
- Realizing that self care is not selfish, but instead is a way that we can care for ourselves so that we show up for others.
- Controlling how we show up to something that happens, and not trying to control what actually happens.
- Allowing yourself to feel your grief, and how to turn towards healthy habits like exercise, meditation or yoga to tune into your pain.
- Never be afraid of saying the names of the kids you lost. While painful, it’s definitely worth it.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/18
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.
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What do you do when everything you thought being a parent meant gets turned upside down with one diagnosis? How do you deal with the isolation of being a NICU parent?
In today’s episode, I’m speaking with Tyler Simon who works at the University of Chicago Medical Center - which was also where her oldest son Bennett, now five years old, spent the first 4 months of his life.
After a fetal MRI discovered abnormalities at just 19 weeks of pregnancy, Tyler and her husband were in complete disbelief when her water broke prematurely at 31 weeks.
Faced with the decision of having to go back to work 10 days postpartum with Bennett still in the NICU - in order to save her maternity leave days for when Bennet was discharged - Tyler shares with us the highs and lows of their NICU experience.
Tyler also teaches us how to find a community within primary care nurses and medical teams, how to navigate the solitude of NICU parenthood and major surgeries, and shares their post-NICU journey now that Bennet is in kindergarten.
She inspires us to never lose hope and to really celebrate the wins no matter how small or how silly they may feel, “because you never know when the next one will come”.
Key Takeaways with Tyler Simon
- How Tyler overcame the solitude of NICU parenthood.
- The importance of creating your own community with the staff at hospitals.
- How to let go of control and accept things as they come.
- The scary journey of bringing your baby home from the NICU
- Balancing work and parenting a child with disabilities
- Building trust with primary care nurses and medical teams is a win-win situation.
- Knowing when and how to ask for help and allowing others to help you when they offer.
- Never forget that you are the parent and you need to speak on behalf of your child.
- How to deal with the feelings of mom guilt.
- Celebrating the small wins because that is where you’ll find the joy in your journey.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/17
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.
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When Jacqueline Tillman's daughter Tiana was just 3 months old, she went into heart failure. After the second trip to the hospital, Tiana was diagnosed with dilated cardiomyopathy, which unfortunately meant that she would need a heart transplant. There is no doubt about how hard it is to wrap your head around the fact that one family needs to suffer a loss to help save your child, especially when your little kiddo is in the NICU. But Jackie and her husband Charles Tillman are certainly paying it forward with their generous spirit.
Jackie is a mother of 4 and an advocate of children's charities and heart research. And you just might recognize her husband as the legendary NFL cornerback of the Chicago Bears and the recipient of the 2013 Walter Payton Man of the Year award.
In 2005, they created the Charles Tillman Cornerstone Foundation. When Tiana was born in 2008, they created the Tiana Fund, which helps provide unique support and financial assistance to families with sick children.
Jackie shares her experiences while caring for Tiana in the hospital. You'll hear how fortunate she was to be able to spend time with their daughter when so many couldn't. We also discuss why it’s such a huge challenge for so many families to spend time with their children who are receiving and recovering from treatments and why Jackie and her husband are so passionate about the work they're doing.
She talks about the important roles that social workers play for families with sick children, how they celebrate a "heart" birthday each year for Tiana, and how Tiana was the first recipient to receive the Berlin Heart in Illinois.
She also reminds us that it's vital that we speak up when our children can’t speak up for themselves. While the doctors are the medical experts, parents always know their kids best.
Key Takeaways with Jackie Tillman
- How Jackie knew that something wasn’t right with Tiana when she stopped eating and what led to her diagnosis.
- What the Berlin Heart does for those who are waiting for heart transplant surgeries.
- The ups and downs that Tiana had along the way, from being in a coma, and paralyzed on and off, and the 6 months of chemo treatments.
- How Tiana became addicted to pain medication as a child and had to be weaned off of those medications.
- Understanding how difficult it is for families that still have to work instead of spending more time with their kids in the hospital.
- Many kids spend a lot of time being alone in their rooms.
- How the Tillman family celebrates Tiana’s heart donor with a heart birthday each year.
- The realization that benefitting from a heart transplant also comes with many follow-up visits, as often as every 3 months.
- Parents know their children best, so don’t be afraid to speak up if you feel like something isn’t right.
- The important roles that social workers play in addressing the needs of families, including making connections to charities like the Tiana Fund.
- The amazing things that the Charles Tillman Cornerstone Foundation is doing to help other families with sick children.
- How the Tiana Fund uniquely helps families with almost every challenge, both financially and non-financially, with whatever support they can offer.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/16
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.
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When a mom has a newborn child in the NICU, every moment and every breath can be stressful. But when you have two preemies in the NICU, those worries are doubled. Today's guest knows exactly what it's like to have two kids in the hospital for several months and has published a survival guide to share her professional advice and what she learned from her own experience.
Dr. Heather Evans is a proud mama to her miracle twins, Gavin and Hannah, who have grown from 1.5 lb babies to happy 8-year-old kiddos. Professionally, she's a pelvic health physical therapist specializing in pregnant and post-partum patients.
She's also the author of Learning to Breathe and The NICU Mama Survival Guide: Post-Partum Healing From Your Baby's Bedside, which are fantastic resources for any mama who has spent time in the NICU.
In this episode, you'll hear why she went into premature labor at just 22 weeks and then delivered twins two weeks later. She shares her experiences of the next 4 months in the NICU, watching every breath that she could along the way as they battled with respiratory issues and other infections. She also talks about her own physical recovery from delivering twins via C-section.
I'm so thankful to have Heather on the show to share her wisdom and expertise about pelvic health and the important reminder that as moms, we can only take care of our children if we take care of ourselves and our own recovery first.
Key Takeaways with Heather Evans
- How her journey began with IVF treatments and continued until she was forced to prepare for premature labor at 22 weeks.
- That many hospitals rarely performed premature deliveries at 22 weeks, even as recently as 8 years ago.
- The medical treatments that delayed her pregnancy by 10 days, and how critically important that extra time was.
- The gratitude for the nurse who congratulated her after the delivery in such a stressful moment.
- All the challenges that her babies overcame during their 4 months in the NICU.
- What inspired Heather to write her books.
- Just how difficult the recovery process can be after a C-section, and why Heather is so passionate about pelvic health.
- The resources that are available for someone who is searching for pelvic therapy.
- That NICU mamas need to take care of their own recovery, and not just put all their focus on their babies.
- Always appreciate all the moments that bring you joy at the time.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/15
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.
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I am delighted to welcome Mary Strenski to the podcast as we first met when my daughter, Mattea, was in the hospital. Nurses play such a huge role in supporting parents who have sick kids, and I’m excited to be able to share some words of wisdom from her today.
Mary is a Critical Care Nurse at Comers Children’s Hospital and has been a nurse for over 30 years. She started her career in the adult surgical ICU, then pivoted to the PICU, and now she supports nurses at Comers by helping them be the best nurses they can be with all the experience she’s gained over the years.
In our conversation, Mary shares some great advice to any parent with a child in a hospital. You’ll hear that they really understand how it can be a stressful situation for the parents with a kiddo in the hospital, how she builds a connection with the parents with her sense of humor, and to know that she’s making a difference brings her all the joy that she needs.
Key Takeaways with Mary Strenski
- How nurses do their best to be honest with parents about what is happening with their child, with both good and bad news.
- How the best nurses try to bring a bit of humor whenever possible
- The importance of making sure that parents are also taking care of themselves, both physically and mentally, during a lengthy hospital stay.
- How nurses do their best to make sure parents stay involved and can connect with their child as parents often feel excluded.
- Find a nurse that you can connect with, and understand that you probably won’t build a connection with all them.
- How most nurses appreciate insight and observations from parents, especially since parents have a better understanding of their child’s personality.
- What the role of a primary care nurse is, and how you can request one to be assigned to your child.
- Mary’s advice on how friends and family can help parents, especially with daily routines at home.
- The challenges that Covid has created for supporting parents with children at the hospital.
- The joy that nurses get from knowing that they can make a difference in someone’s life.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/14
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.
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Sometimes life deals a hand to you that most people would never choose for themselves, but that doesn't mean that finding joy in your own journey isn’t possible. And today's guests speak to this in a way that is just so beautiful to see.
Tommi is a mother of 3 wonderful girls. Her oldest daughter Amanda was diagnosed with a rare form of Spina Bifida, a debilitating and progressive neurological condition, when she was 6 years old. As a result, she has endured dozens of surgeries and many extended hospital visits in her life over the last 23 years. Once you hear her story, I know it will inspire you and help you to appreciate all the little victories in your life.
There were so many great takeaways from this conversation that I know will resonate with you as well. Hearing their perspective, their outlook on life and the things they have learned from this experience was nothing less than powerful and inspiring.
This mother and daughter duo shares a ton of great advice for families who need to spend a lot of time in hospitals. From keeping your child in the loop, not just about life at home, but the conversations with medical treatments when it's appropriate. They also reinforce the idea that we can only focus on the things within our control, and if you can find humor along the way, it makes a huge difference.
Key Takeaways with Tommi and Amanda
- Sometimes ignorance is bliss when thinking about the number of surgeries.
- The importance of keeping your child in the loop with everyday life at home when you have a child in the hospital.
- Finding ways to experience some joy in the hospital, especially during the holidays.
- Make sure to focus on the little things, as sometimes they are more important than we initially realize.
- Think about the things that are in your control, and not in the things that you can’t control. Those little things can be a small victory for the day.
- Treat child patients just like any other child, even when it comes to discipline.
- The importance of teaching your children that it’s not okay to treat medical staff poorly just because you're frustrated with your own situation.
- Your child will appreciate that you include them in the conversations about medical treatments when it’s appropriate to do so.
- Children that spend a lot of time in the hospital tend to be more mature than children who don’t by the sheer amount of time spent with highly educated professionals.
- Finding humor will make your daily life much easier.
- The challenges of finding your identity when you're always caring for others or focused on your own health.
- Even though you haven’t chosen the journey you're on, finding joy in it makes all the difference.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/13
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.
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It’s not uncommon for a family to experience kindness and generosity when a child is diagnosed with cancer. But when that family finds joy in paying it forward, it’s a pretty incredible thing to see. That’s why I’m so excited to share the journey that Jordan and Nikki Arseneau are on with you today.
Their medical journey started a little over a year ago when their 4-year-old, Joy, was diagnosed with acute lymphoblastic leukemia. And if that wasn’t enough, Nikki also lost her father during this time. With their faith in God and help from their friends and family, they have found ways to bring joy to others.
You’ll hear about how their daughter, Joy, is getting her smile back, even while going through the daily treatments of chemotherapy. They also share the wonderful story about how their son created a fundraiser that raised over $2000 for JoyStrong.
You’ll also hear about the silver linings that came with Covid, the overwhelming help and support from their community, and the organizations that not only changed their life for the better but inspired them to always say yes when it came to generosity.
If you want to support JoyStrong, you can find more information here.
Key Takeaways with Jordan and Nikki Arseneau
- The silver lining of starting a medical journey during Covid-19.
- How the pandemic has actually made things safer for families that are dealing with similar medical issues.
- The connection with others that they found while in the hospital.
- The organizations that will change your family’s medical journey.
- How their faith in God gave them the strength to carry-on.
- The helpful perspectives that they gained connecting with others who were experiencing similar issues.
- That God has a plan, we just have to see the big picture.
- The joy from seeing your children learn the spirit of generosity by following your example.
- How to practice gratitude within your life and be thankful for the little things when you know that other families are facing bigger challenges.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/12
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.
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Jen Gawel has not only mastered the hardships in her life but puts effort and intention into giving others the tools to master their own challenging paths, and she does it all while oozing joy from every fiber of her being.
If you ask Jen about her family, she will tell you that her family is just like everyone else's; they just accommodate a few differences along the way. She's a mom of three kiddos and having spent as much time in the NICU as she has, her attitude and perspectives are incredible.
Even though your journey as a parent might start in the NICU, it doesn't end there. Her second child, JD, was diagnosed with a very rare condition called Wolf-Hirschhorn Syndrome. Some may describe it as missing the 4th chromosome, or as Jenn would say, it just makes you lose some of your chromosomal instruction booklet.
And her third child, Kaitlyn, suffered from cardiac complications, having a pinched aorta, something that she says was almost harder because it was so unexpected.
I'm just delighted to share Jen's story with you today. You'll hear from one of the sweetest supermoms that I've ever met as she reminds us that through all the ups and downs, we have to look at the big picture and let our friends and families help us continue on with our own journeys.
Key Takeaways with Jen Gawel
- Why Jen thinks of the NICU as a warm hug.
- The gratitude that she has for the nurses at the NICU.
- The sense of community that comes from sharing your stories and connecting with other parents.
- The comfort that comes from having the opportunity to go through a grieving process after receiving a challenging prenatal diagnosis.
- The deep connection that comes with nursing a child.
- The hope that came with doing their own research and understanding what their child could do instead of what they couldn’t do.
- The power in writing your own narrative for your family.
- Everyone is unique, but your family is the same as anyone else's family in all the ways that truly matter.
- The importance of teaching your kids about how it’s okay to be different.
- Enjoying and cherishing the little things goes a long way.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/11
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.
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I am so grateful and honored to have today’s guest on the podcast. Carrie Meghie has been recognized as one of CNN’s Heroes and is affectionately known as the “parking fairy” through the work she is doing with her foundation. It’s an amazing story and I can’t wait for you to hear it.
When you have a child in the NICU, as a parent, the only thing you want to do is be there with them every moment that you can. But spending days, weeks, and months comes at a cost. Carrie knows about these challenges very well, and it’s so great to hear about the impact she is having on people’s lives.
Carrie is a successful businesswoman with a background in hospitality and real estate. She’s been voted Chicagoan of the year in Chicago Magazine and is the Co-Founder of The Jackson Chance Foundation, a non-profit that is dedicated to providing resources to families with babies in the NICU.
Carrie shares the story of her son unexpectedly being born 10 weeks premature and the challenges they faced as Jackson spent all 10 months of his life in the NICU between two hospitals.
After spending thousands of dollars on parking during their time in the hospital with him, she knew that she wanted to do something to help others. This experience inspired Carrie and her husband to create an amazing foundation to honor their son and give parents the freedom to enjoy more time with their babies.
She shares the lessons that come with the loss of her son, the challenges of finding affordable parking with a child in the NICU, and all the wonderful things her foundation is doing to help families spend more time with their kids.
Key Takeaways with Carrie Meghie * How Carrie dealt with the news of an unexpected premature birth. * The tough decisions that come with having a NICU baby. * How an experience like this puts everything in perspective. * The shocking costs for parking when you’re spending so much time at a hospital. * The things that you wished you knew sooner about the NICU. * Why open communication with your partner goes a long way. * Managing the feelings of seclusion when your child is in the hospital. * The importance of celebrating each moment and every milestone in the journey.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/10
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.
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Sometimes it’s hard to find the strength to move on when you feel like your feet are stuck in cement.
Today’s guest knows exactly how that feels and has made it her life mission to make that support more readily available for girls like her⎯ girls that need to feel a little less alone in their community.
Cara Belvin is the founder and CEO of the non-profit organization called empowerHER®, a place where girls can come to talk about the oftentimes uncomfortable topic of loss. The foundation was inspired by her mother, who was taken from her at age nine from breast cancer.
She created the mentor program because of the tremendous amount of gratitude she felt for people’s endless courage and compassion during her life, even from simple gestures of a friend giving her a Blow Pop every Mother’s Day.
Cara shares her thoughts on creating space for community, speaking your truth, and wants you to know that the loss you suffer is survivable. And she asks us to remember these three things: You are enough, your feelings are a gift, and it’s okay to ask for help.
Key Takeaways with Cara Belvin
- Extension of family and the network of supportive people around you.
- The importance of connection and knowing you’re not alone.
- Sharing the burden of your loss.
- The realization of everyone dealing with their own lens in the face of grief.
- Why do you need to know about other’s survival?
- Ask the hard questions and talk about your loss.
- The courage it takes to talk about your loss.
- How to find the strength of building community and seek your truth.
- It’s okay to feel like you can’t get out of bed.
- How can you get involved.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/9
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.
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My guest today is Jenny Kernan. She’s a mother of three beautiful children, with two of them at home and one of them in heaven.
When they were ready to start a family, she struggled to get pregnant, and decided to take the fertility route. After going through the difficult process of taking follicle stimulating hormone shots, and Clomid, it wasn’t long before she got the great news that she was pregnant, with twins!
Everything seemed to be going well until the ultrasound at 20 weeks when her doctor broke the news that one of her twins had a heart condition, which could be resolved with surgery after they were born. But at the 24 week mark, she went into labor and a week later went into delivery via C-section.
Jenny talks about how thankful she was to spend 49 days with her beautiful son, Dylan, before he joined God, and how she volunteers in remembrance of him and in honor of her children.
Both Jenny and her husband Pat are huge supporters of the foundation March of Dimes, and have raised over 1 million dollars for the NICU family research and support program. They won the Field's Family Legacy Award for their years of volunteerism and continue to help increase the quality of life for babies in the NICU. I hope that their message will inspire others who have faced similar challenges in their lives.
Key Takeaways with Jenny Kernan
- The difficulties that come with fertility hormones.
- How to overcome the extreme complications that can come with pregnancy.
- The terrifying moments that come with having premature twins.
- The moment when you’re told your baby might not survive.
- The one thing you should never take for granted.
- How giving support to your community is a way that will honor your children.
- Learn how you can gain NICU support from March of Dimes.
- How talking about the child that you lost can feel good.
- How do you find your safe place after a trauma?
- Learn how to peel back the important parts of life to live life to the fullest.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/8
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.
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How do you keep going after losing your child? How do you deal with the grief when life has to continue for not just yourself but also your family?
Today, I'm speaking with Amanda Fierce. Amanda is a 5th-grade teacher, mother of three beautiful children, a volunteer for multiple causes, and a huge supporter of Mattea's Joy.
At only 23 weeks into her pregnancy, Amanda’s water broke unexpectedly. She held off on her labor for 14 days before finally giving birth to her son Connor. During his stay in the NICU, Connor suffered from an infection, forcing Amanda to deal with the jarring realization that her son would die at just 2 weeks old, shifting her family’s life forever with a trauma they weren’t prepared for.
In today's episode, Amanda teaches us how to come to terms with grief, the lessons that she sometimes wished she never had to learn, and how to find the peace that's right for you.
She tells us that even though we'll never forget those painful memories, the sharp edges of our heartache will soften over time.
Key Takeaways with Amanda Fierce * Coming to terms with heartache. * Why people distance themselves from loved ones after trauma. * Take the signs that life offers. * The shifts that change your family life forever. * Finding the peace that’s right for you. * How do you navigate everything that comes with loss? * How do you handle feeling alone? * How do you reintegrate yourself into the world around you? * Coming to terms with the reality of losing a child. * Can you find peace in death? * How to be there for someone else when they need it most.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/7
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.
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Sometimes when you can’t control the circumstances life gives you, you try controlling everything else—something I know I’ve done as a mother.
Today’s guest, Amy Kemp, is talking about how sometimes you need to make space for others to do things for you, especially when you’re dealing with difficult moments in life.
Amy is a public speaker, and the owner and CEO of Amy Kemp Inc., where she helps leaders and business professionals understand how deeply thought habits impact every part of work and life. She’s a certified Habit Finder Coach, and she’s helped over 200 female entrepreneurs through their leadership development journey.
Amy is showing us how we can get through challenges by teaching ourselves a different way of thinking. She shares the dangers that come with expectations and assumptions, and dives into the tools you need to help ground yourself in the moment.
She also shares healthier coping mechanisms for life's struggles, how to articulate your needs, and most importantly how to allow space for other people to help you on your journey.
If you want to learn new thinking habits and how to be present in your current circumstances, don’t miss my conversation with Amy Kemp!
Key Takeaways with Amy Kemp * How can emotional attachment amp up any challenge? * Catastrophic vs. Fantasy thinking. * How do you deal with expectations and assumptions? * What fight or flight has to do with hurtful expectations. * Tools you can use to get through life’s challenges. * Learn how to bounce your concerns off of the people you surround yourself with. * How to bring yourself back to the present moment and ground yourself. * How moving your body and listening to music can help you get out of flight or fight moments. * Feeling a loss of control and how that can affect you mentally and physically. * Why do our brains need to draw conclusions, and what happens if they can't? * Grounding everyday tasks that help you get through hardship. * Destructive escapism and figuring out healthier coping mechanisms. * Learning to delegate things and articulating your needs. * The power of systems and checklists! * Allowing space for people to help you. * How to advocate for your kids when what they need is beyond your scope. * How difficult circumstances can lead to positive outcomes.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/6
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.
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Today, I'm speaking with Joy Harmon—a courageous woman who has overcome more than her fair share of hardship.
Only 15 weeks into her first pregnancy, Joy had a placental abruption. She underwent a C-section and spent four months watching over her daughter in the Neonatal Intensive Care Unit. By the time her first daughter was two years old, they had their second little girl, who also spent time in the NICU.
And if life wasn't challenging enough, Joy was also diagnosed with breast cancer years later. This life-changing experience led to her non-profit organization, Bringing Joy, which provides support for families coping with cancer.
In this conversation, Joy sheds light on the post-traumatic stress of going through NICU twice and how she found joy, even when her kids were fighting for their lives.
Joy talks about the difficulties of pregnancy not going as planned, the aftermath that no one can prepare you for, and how to explain to your children that you've been diagnosed with cancer.
Key Takeaways with Joy Harmon * None of it is easy, but we came out on the other side which doesn’t always happen. * How do you prepare yourself for the aftermath of having a baby in NICU? * Learn about early intervention and keeping up with your child's therapies. * Speak up when something isn’t going right. * Why it’s okay to ask for help as a parent.. * The most surprising extension of family that you gain during unexpected traumas. * Navigating the difficulties of having one child in NICU while the other is at home. * The PTSD that comes with being a NICU parent. * The good and bad of being prepared. * Seconds to figure out how to deal with life changing circumstances. * Be willing to assist others who are going through similar difficulties. * The importance of celebrating the little things. * The truths that come out of having a NICU child. * Knowing there is joy even during years of difficulty and depression. * How do our children inspire us to be better?
Show Notes:
Get Full Access to the Show Notes by Visiting: MatteasJoy.org/5
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.
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It’s hard to allow other people in on your journey through life, especially for the difficult moments.
No one knows this better than today’s guest, Kim Piggush.
She’s on a mission to spread cancer awareness through public speaking as well as mentoring others through their battles with the disease.
Kim is a wife, mother of two beautiful girls, and a 2-time cancer survivor. She’s currently the Chief Operating Officer at S.A. Piggush Financial Consultants and has a previous background at K.M.P. Coaching & Consulting, her own coaching company, which set her out to climb the corporate ladder.
During her first pregnancy she was told she suffered from pancreatitis, which was actually a 10-year misdiagnosis of colon cancer, forcing her to figure out the intricacies of fighting insurance companies, putting her career on hold, and how to be a good mom while being sick.
In this episode, Kim shares the positives around the isolating moments that are darkest in your life, and how to be grateful for the empathy and generosity that you learn through your hardships and through your kids.
Key Takeaways with Kim Piggush * How do you navigate being a mom while also having cancer? * How can your struggles turn you into a warrior? * Learn the grace of people coming into your life, and the lessons people teach you when you let them in. * How to see people in a different perspective to foster empathy. * Prepare yourself to fight insurance companies and figure out how to deal with the legalities that come with a cancer diagnosis. * Allow yourself to get help from other people who are going through similar struggles. * Redefine the experience and realize many people are going through it with you. * The isolation of our darkest moments. * Dealing with the infamous ‘it could be worse’. * How to tackle the ‘why me?’
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/4
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.
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It’s so hard to conquer your fears and give yourself over to God, especially on the hard days. And my guest today has a lifetime of experiences that I know will be very meaningful to anyone who is facing similar challenges.
In today’s episode, we have the lovely Annie Kidd. Annie is a mother of two, and a nurse of circumstance who went through 38 years of caring for a child with five different heart defects—and she’s thankful for every day that God gives her.
Her daughter, Courtney, who had seven surgeries (including a liver transplant), became a pioneer to create other opportunities for sick babies with similar heart conditions.
Annie shares Courtney’s journey and also speaks about the difficulty of navigating breast cancer twice, going to college at the same time with her two kids, and reminds us that smiling and having fun is the most important thing for your children to see.
Listen to today’s episode to hear this inspirational story about faith, hope, and strength!
Key Takeaways with Annie Kidd * Annie talks about how her daughter fought liver sarcoma and passed away on her 38th birthday. * Why your health conditions don’t define who you are. * Don’t rob yourself of joy today. Turn your worries over to God and take the signs he gives you. * The power of conquering your fears, and giving yourself to God? * How do you navigate the experiences of chronically ill children and remember your blessings? * How having a chronically ill child gives you a better perspective on the world. * The importance of giving your children hope and faith. * Find joy in everyday life, whether it’s from practical jokes, scary movies—just always have fun! * That it’s okay to give your child a break. * Never give up hope and always try to buy as much time as you can. * How do you find the touchstones of peace after your child passes away? * The belief that our children are on loan from God. * Tips for your own family’s medical journey
Show Notes:
Get Full Access to the Show Notes by Visiting: MatteasJoy.org/3
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.
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It’s so hard to know what to expect as a parent, and even harder when your child has medical issues that were never on your radar.
Today, we have the courageous Lorna Walker joining us on our very first interview of the podcast, to talk all about how to maneuver the stress, depression, fear, and setbacks that come with having a critically sick kid.
Lorna is a blogger of Walk This Way, and author of Trach Free for P: How One Little Boy's Life was Spared to Impact Countless Others.
In our discussion, she reveals the trials and tribulations of having her twin boys in the NICU, the gripping fear of one of her children code on an operating table, and the overwhelming challenges associated with a son who had to undergo a tracheostomy.
Lorna teaches us about the gift of perspective; being able to see the great things that may not feel so great in the moment, and how to find the silver lining in the midst of despair.
She is heart wrenchingly honest with the shame she experienced surrounding IVF treatment, her fears of the unknown, and using medication to treat her depression.
Join us for this amazing discussion and hear to how one little boy's life impacted countless others.
Key Takeaways with Lorna Walker
- Lorna talks about her IVF experience and how it mentally prepared her for a tough road ahead.
- The medical incident that led to her son coding on the operating table, requiring an unexpected tracheostomy.
- Giving yourself permission to take a mental break—even during times when it feels like your family needs you the most.
- Dealing with the shame and stigma that comes from an IVF pregnancy.
- Appreciating the expected and unexpected angels that show up during life’s darkest moments—and how Lorna connected with a family going through similar struggles.
- Understanding why the people who are closest to you prior to a tragedy or life-changing event may not be there for you when you need it—and that’s ok.
- Lorna shares the experience that revealed God’s plan and why her faith was vital to her survival.
- The #1 resource Lorna recommends to Mom’s going through tough times.
- Pay attention to when God shows up and know that he’s got your back!
- The importance of taking care of your physical and emotional well-being—and why medication was critical to Lorna’s happiness. What does your personal self-care look like?
- The therapeutic writing experience that allowed Lorna to find more joy in the journey!
- How do you navigate knowing your child will be going through pain, while needing to live in the moment?
- The gift of perspective and being grateful for how fortunate you truly are.
- Why service to others is a doorway to joy.
Show Notes:
Get Full Access to the Show Notes by Visiting: MatteasJoy.org/lorna-walker
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.
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Welcome to the Joy In the Journey podcast! My name is Jamie Freedlund, and I’m the host of the show and Co-Founder of Mattea’s Joy, a non-profit organization that helps families with hospitalized children.
I know firsthand what it means to be the parent of a sick kid, and the challenges that go with it, as my daughter, Mattea Joy, was born with several severe medical complications.
My husband and I were given a very small chance that Mattea would survive at birth. Thankfully, we were able to share nine and a half wonderful months with her that we didn't expect to have. This experience led to a deep level of gratitude, shifting our lives as a result, and allowing us to discover joy in every day—even the tough ones.
Through this podcast, my hope is to help other families going through similar struggles and to remind them that they’re not alone.
Please join me as I share beautiful stories from resilient human beings who managed to find strength during life's darkest moments. And remember, life will bring unexpected circumstances, but choosing joy makes all the difference.
Key Takeaways with Jamie Freedlund * Mattea's prenatal diagnosis and the challenges that Jamie and her husband faced along the way. * The gratitude that they felt when Mattea survived the delivery. * Choosing joy over anger and despair. * Leaning on faith to get through dark times. * Spending 13 weeks at home with Mattea and the lessons learned. * How Mattea's Joy helps families with critically ill kids at Comer Children’s Hospital.
Show Notes:
Get Full Access to the Show Notes by Visiting: MatteasJoy.org/1
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.
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