Joy In The Journey

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.

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.

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.

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.

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.

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.

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.

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 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.

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!

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.

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 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.

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!