Joy In The Journey

By Jamie Freedlund

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Description

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!

Episode Date
44: Brave Hearts & Brittle Bones with Rachel Glad
39:17

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!

Nov 29, 2022
043: Discover Joy: Build Your Joy Muscles To Do Hard Things with Jamie Freedlund
18:47

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!

Nov 22, 2022
042: Honoring the Servant’s Heart of Family Caregivers with Kim Kane
26:33

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!

Nov 15, 2022
041: De-Stressing the NICU Experience for Parents with Dr. Bree Andrews and Dr. Joanne Lagatta
44:08

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!

Nov 08, 2022
040: Finding The Magic In The Mundane with Joann Martyn
40:59

When tragedy strikes, it’s normal to want to turn inwards and shut out the rest of the world. But while focusing on the challenge ahead is important, it is also important to remember to stay open to receiving medical and emotional support to care packages… and even unexpected friendships.

When Mattea was in the NICU, and I was in the thick of adapting to this life-changing event, Joann Martyn came into my life. Her baby boy, Theo, was also in the NICU, but it was her life that had truly been at risk when a severe and rare form of preeclampsia (a hypertension disorder) threatened to take it.

Joann is a lifelong friend of mine and a true source of inspiration. I couldn’t be happier to share her best advice on, as she puts it, “finding the magic in the mundane.” She is not only surviving the challenges life throws at us but also growing through them and thriving. Having survived a series of five brain stem strokes which have a 97% mortality rate, she is living proof of this.

Since we met, she’s worked her way up to being the Director of Online Learning at DePaul University, where she helps her students navigate the world in really beautiful ways. And her “baby” boy, once considered a micro-preemie, is now a 5 ’11 happy and healthy 13-year-old teenager.

Life has thrown every imaginable challenge at her, but it’s how she has mastered being present in her day-to-day life, accepting life as it happens, serving others, and letting others serve you in times of need that makes her a true force to be reckoned with.

You’ll hear Joann’s best advice on navigating life at the hospital/NICU (for yourself or your children), finding hope and happiness through challenging times and giving yourself permission to do what you enjoy doing most.

There’s a good chance this episode will give you the best kind of goosebumps, and I hope it lifts you up and inspires you whenever you need a boost.

Key Takeaways with Joann Martyn

  • How the hardest days of your life can leave you with important lifelong lessons, and even friendships.
  • Tips for navigating life in the NICU, especially while holding a full-time job or parenting other children.
  • Letting go of birth plans and expectations through pregnancy complications.
  • The importance of opening yourself up to receiving help when needed, and how it can teach you to serve others even better.
  • How to accept each day as it comes, and be grateful and present when possible.
  • Advice on giving yourself permission to do what you enjoy most, from someone who has had several near-death experiences.
  • Romanticizing your life to make the best out of your ordinary daily routines.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/40.

Rate & Review

If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, or wherever you listen, so future episodes are automatically downloaded directly to your device.

You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU!

Nov 01, 2022
039: Helping Parents to Choreograph Their Own Family-Centered Journey with Jenny Berchtold
53:49

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!

Oct 25, 2022
038: Keeping the Faith, Living in the Moment, and Growing #PiersenStrong with Tim Eaker
32:44

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!

Oct 18, 2022
037: Inspiring Lessons on Infertility & Defeating Cancer with Laura Andersen
36:12

Announcing a pregnancy and bringing a baby into the world can be one of life's most joyful experiences. Yet, according to the CDC, 1 in 5 couples struggle with infertility, and it's a topic many people don't feel comfortable talking about when they're in the middle of it.

That's why I invited Laura Andersen to share her story with us today. Laura and her husband struggled with infertility for four years. After years of feeling like they were living alone on an island where they were the only ones going through it, everything changed when they welcomed their beautiful and healthy baby triplets into the world.

Her children are 11 years old now, and she can't remember a life without them. Laura shares the highs and (mostly) lows of infertility, how to find hope and keep going, and how her story has helped couples feel seen and less alone.

But this wasn't the only curveball life had in store for Laura: just 6 months ago, she was diagnosed with facial cancer.

Thankfully, it was a form of cancer that could be treated with multiple surgeries. And even better, Laura is officially cancer-free today! You'll hear how much stronger she felt once she started sharing her story, how she feels compelled to talk about it now and how to guide your children through difficult journeys with you.

Laura also reminds us that your journey doesn't have to be a constant state of gloom just because it's difficult, and that you'll only feel alone on an island if you don't invite the people you love to be with you.

Key Takeaways with Laura Andersen

  • Dealing with the feeling of loneliness that comes with infertility.
  • How sharing your journey with others can help you feel supported and empowered.
  • How small acts of kindness can mean the world to someone going through a tough time.
  • Laura’s advice on how to navigate a cancer diagnosis and embrace/welcome all your feelings.
  • How to share a difficult diagnosis with family members and children and how to help them feel supported through your journey.
  • How the power of journaling helped Laura through those difficult times.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/37.

Rate & Review

If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, or wherever you listen, so future episodes are automatically downloaded directly to your device.

You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU!

Oct 11, 2022
036: Helping Moms with Life After the Loss of a Child with Joy Harris
27:26

Navigating infant or pregnancy loss is confusing, heartbreaking, and can feel very lonely. So many things become difficult, including simple questions like “How many kids do you have?”

Since October is Pregnancy and Infant Loss Awareness Month, I wanted to invite a guest that would be able to help the many families out there who may be walking through life after the loss of a child.

I’m thrilled to introduce you to Joy Harris. Joy is a serial entrepreneur and motivational speaker who tragically lost her son, Darien, to stillbirth nearly 20 years ago. Since then, she has written a book (and companion journal) titled Missed Baby Steps: an extremely helpful resource for families that are missing all those firsts with the child they dreamed of.

Joy shares some excellent advice on navigating the different phases of the grieving journey, connecting with other parents going through similar journeys, and even supporting your other children through the grief.

She reminds us to validate our feelings: whether you’ve lost an infant or had an early miscarriage, your feelings of loss and grief are real and important to process. Most importantly, Joy reminds us that it is possible to find meaning and joy after experiencing loss.

Key Takeaways with Joy Harris

  • Navigating life after loss of an infant during or after pregnancy.
  • Joy’s advice for anyone that would like to support parents dealing with loss.
  • The impact that can be made by connecting with other parents who experienced a similar loss to yours.
  • The challenge of watching your other children manage grief after loss of a sibling.
  • How moms deal with difficult questions like “How many children do you have?”
  • The importance of honoring the memories and life of a lost child.
  • Understanding that it is a family affair (everyone experiences the loss in one way or another).
  • How Joy turned a tragic journey into one with meaning and purpose.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/36.

Rate & Review

If you enjoyed today’s episode of The Joy In The Journey, hit the subscribe button on Apple Podcasts, Spotify, Stitcher, or wherever you listen, so future episodes are automatically downloaded directly to your device.

You can also help by providing an honest rating & review over on Apple Podcasts. Reviews go a long way in helping us build awareness so that we can impact even more people. THANK YOU!

Oct 04, 2022
035: Paul Cardall on the Healing Power of Music
52:29

“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!

Sep 27, 2022
034: Steve Magness on Being Resilient So You Can “Do Hard Things”
43:54

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!

Sep 20, 2022
033: From The Depths of Grief To The Highs of Pure Joy with Heather Earl
48:16

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.

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Sep 13, 2022
032: Within Darkness, There is Light and Joy Heals with Jennifer Trepanier, M.S.
31:08

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.

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Sep 06, 2022
031: Empowering Families and Reducing Hospital Anxiety with Amy Carter
44:21

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

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Jun 21, 2022
030: Heartwarming Advice For Parents from a NICU Professional Panel
57:27

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

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Jun 14, 2022
029: The Four Lies Moms Tell Themselves with Dr. Michele Arnold
35:18

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

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Jun 07, 2022
028: Navigating the Emotional Roller Coaster of the NICU with Kelley Thompson
28:25

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

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May 31, 2022
027: A Home for Hope in Ronald McDonald Houses with RMH CEO, Holly Buckendahl
31:49

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

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May 24, 2022
026: The Inner Strength of the Heart Strong Collective with Jessica Lindberg
26:08

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

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May 17, 2022
025: Teaching Others to See the Beauty in Everything with Nicole Carr
36:32
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

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May 10, 2022
024: How Bryce’s Bill is Saving Lives with Joel Clausen
33:07

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

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May 03, 2022
023: The Educational Path for Children with Special Needs with Kristi Herschberger
22:06

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

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Apr 26, 2022
022: Bravely Battling Batten Disease with Amanda Beedle
35:23

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

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Apr 19, 2022
021: The Journey from the NICU to Ultimate Happiness with Karri Friedenberger
38:10

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

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Apr 12, 2022
020: Caring for Caregivers with Jessica Ronne
27:19

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

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Apr 05, 2022
019: How the PreeMe+You App Empowers NICU Parents with Dr. Yaya Ren
33:26

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

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Mar 29, 2022
018: Cultivating Gratitude in the Face of Fear with Stefanie Boyce
36:14
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

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Mar 22, 2022
017: Connections, Community & Hope for NICU Parents with Tyler Simon
30:23

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

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Mar 15, 2022
016: Giving From the Heart with Jacqueline Tillman
30:37
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

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Mar 08, 2022
015: A Survival Guide for NICU Mamas with Dr. Heather Evans
32:16

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

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Mar 01, 2022
014: The Joy That Comes From Making a Difference with Mary Strenski
25:26

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

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Feb 22, 2022
013: Learning to Love Harder and Laugh Louder with Tommi and Amanda
49:04

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

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Feb 15, 2022
012: Sharing The Blessings of Generosity and Joy with Jordan and Nikki Arseneau
40:15

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

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Feb 08, 2022
011: Finding Joy and a Warm Hug in the NICU with Jen Gawel
43:46

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

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Feb 01, 2022
010: Making the Most of Every Moment with Carrie Meghie
26:05

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

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Jan 25, 2022
009: Creating Empowering Connections with Cara Belvin
34:37

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

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Jan 18, 2022
008: Honoring The Life Of Your Child with Jenny Kernan
24:31

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

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Jan 11, 2022
007: Dulling the Sharp Edges of Grief with Amanda Fierce
56:20

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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Jan 04, 2022
006: Change Your Thought Habits, Change Your Life with Amy Kemp
31:29

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

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Dec 28, 2021
005: Joy Harmon on Coping with a Newborn in the NICU
44:00

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

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Dec 21, 2021
004: Silver Linings: A Life of Gratitude with Kim Piggush
27:43

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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Dec 14, 2021
003: On Loan, From God with Annie Kidd
51:17

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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Dec 07, 2021
002: Turning Your Pain Into Purpose with Lorna Walker
55:35

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

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Nov 29, 2021
001: Welcome to Joy In The Journey with Jamie Freedlund
12:51

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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Nov 29, 2021