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.
- Coming home from the NICU after 13 weeks and the lessons learned.
- How Mattea’s Joy helps families with critically ill kids at Comer Children’s Hospital.
Jamie Freedlund Tweetables
- “Regardless of how hard the journey gets, joy can be found. Sometimes the darkest parts of our lives make the light seem brighter.” – Jamie Freedlund
- “We didn’t want to feel bitter or angry or have the weight that we could palpably feel this mother carrying. And that really changed our journey in so many ways.” – Jamie Freedlund
- “Prayer was a part of our journey, and that day we changed our prayer from prayers of healing to prayers of whatever happens. We understand and we know that we can get through it. And that really brought us a lot of peace.” – Jamie Freedlund
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Jamie Freedlund: Hello and welcome. I’m so grateful you are here. This podcast is designed for parents sitting bedside with the child navigating a medical journey, and you might think, why, Jamie, have you created this podcast? And I really want you to know I’ve been where you are. In 2009, we learned when I was pregnant with our second child, Mattea, that she had some medical complications. We found out at our routine 20-week ultrasound, and subsequently, it was a pregnancy filled with lots of doctors’ appointments, quite a few sleepless nights and uncertainty. We were given less than a 5% chance of her survival at birth.
And at 32 weeks, we delivered her under the suggestions of a really brilliant medical team. Her complications were getting to a place that that was the best choice for us and her that that meant delivering with a really large team at a scheduled C-section and a 13-week journey in the NICU was ahead of us, which we didn’t know at that moment, but we really had a lot of gratitude that she survived that delivery and we were able to be at the NICU with her. And we learned about this new world. We learned all of the terms, the monitors, all these things that weren’t part of our world prior to having Mattea.
We had a two-year-old daughter at home and we learned the challenge that that could bring into our lives of trying to balance being with one child and managing their medical needs, bedside at a hospital, while also managing a really lovely toddler at home that needed equal amounts of love and care. And I know what that feels like to have your heart in two places as a mom, and deciding how to spend that time and how to learn and be there and feel like you’re doing all the things that you want to you to care for your family. We had a moment, my husband Gary and I, when we were in the NICU, the neonatal intensive care unit, which some of you listening might be familiar with.
But we were sitting in the lounge, and it was the first couple of weeks after Mattea had been born, and there was a mom sitting in the lounge with us. And we were part of an open-bed NICU. So, there were a couple of times each day that we had to go out and be in the lounge while the staff was shifting over and sharing about other children in the unit. So, to keep privacy, all of the parents were asked to leave and just be out in the lounge area. So, there was a time each day we were around a lot of other parents, and there was one mom that day that she had had twin children, and one of them had passed away that day. And she was very distraught, which I think any parent would be in that moment, but there was something else about her that my husband and I recognized and we felt really deeply. She was bitter and angry and really struggling.
And in that moment, he and I had a conversation with each other that really was a turning point, and we just decided, regardless of how our journey was going to go with Mattea, that we didn’t want to be there. We didn’t want to feel bitter or angry or have the weight that we could palpably feel this mother carrying. And that really changed our journey in so many ways. To put it in a really simple way, we decided to choose joy. And it didn’t mean that the path was easy, it did not mean that everything was rainbows and Skittles moving forward, but it did mean we took time to just be present each day and find things to be grateful for each day, and that made a huge difference in our journey.
Personally, we’re a family of faith. I know some of you listening might be, some of you aren’t. I welcome you all along. I think we have something to learn from one another in sharing stories. But for us, prayer was a part of our journey, and that day we changed our prayer from prayers of healing to prayers of whatever happens, we understand and we know that we can get through it. And that really brought us a lot of peace. We did go home with Mattea. We had 13 weeks after she was in the NICU, we took her home. We had a really joyful experience of that transition, as well as the nervous scariness of going home with an NG tube and monitors and oxygen and lots of different medications to manage.
I had a brief glimpse into the world, the awesome world. In Illinois, we have early intervention, a team of therapists that helped me discern a plan for her and to help her in a home setting. And I got to live a piece of that. We did spend several months in the PICU with Mattea as well, the pediatric intensive care unit, and I learned what it means to be there, what it means to literally sleep bedside with your child, sleeping through alarms and monitors going off in the night, how important it is to have amazing nurses that care for you as a mom as well as a person, and to recognize the needs that I didn’t even know that I had, the importance of knowing when’s the best time to go take a shower and how to be a part of rounds and advocate for your child. I had a glimpse into this world.
We, unfortunately, did have to say goodbye to Mattea here on Earth. She passed away at nine and a half months, and it was exactly one year from the day I received her prenatal diagnosis of health issues to the day that she passed. And that year has changed every moment of my life since. It’s been an incredible journey. And shortly after she passed away, Gary and I really decided that we needed to do something with what we learned about being bedside with a child in a hospital. I lived with Mattea bedside for over seven months at Comer Children’s Hospital. And I learned firsthand that there were some gaps that were needing to be filled for these families. Yes, some families had financial needs and some very significant, just physical and logistical challenges, but there was this universal need that I saw among all these families that I was surrounded by.
And it’s just this moment of isolation that no one in their immediate life might understand what their journey is like. And because of that gap that we saw, we started a nonprofit in memory of our daughter, Mattea. And her name was Mattea Joy, so we named it Mattea’s Joy. And we began small, we started bringing dinners monthly to Comer Children’s Hospital, just my husband and I, up to the NICU and the PICU just to bring food to families, but more importantly, to create a place of connection for them. We felt like they needed a reason to go and connect with either just us to allow us to hear their story. I found so much value in holding space and listening to the stories of others going through what could possibly be the most significant trial they’ve ever had in their lives.
Whether a family is with their child in a hospital setting for days, for weeks, for months, or for years, it is not what they planned. And that story is valuable, and it’s beautiful to sit with someone and to listen to their story, to learn of their child, to learn of the joys of the day, the things that they want to celebrate, which may be as simple as, hey, my child had her first bath today, or we got to change a setting on their machines or in their medications, or, hey, I connected with another mom in the lounge today, and that was really exciting. Maybe they were able to go and share a coffee together and just find someone who gets it. And if we could be a piece to connect those families, that was really important to us. So, we started monthly dinners that have grown over the last decade-plus. We’ve had the privilege of serving over 10,000 families’ dinners at Comer Children’s Hospital over the years.
And this podcast is an extension of my desire to give place to hear the journeys of others and hope that it allows pods to be made clear and the journey of others to seem more manageable because they’ve heard others going through similar circumstances and can glean of their wisdom and the things that they have learned along the way. Joy in the Journey, why is this the name of this podcast? Because I have learned that regardless of how hard the journey gets, joy can be found. Sometimes the darkest parts of our lives make the light seem brighter. And I challenge you to choose joy to celebrate the milestones with your child.
Just like I said, sometimes it’s not the grandiose milestones, it’s not even the big birthday parties to celebrate in each year, I’m saying the daily simple milestones, celebrate and have gratitude. Gratitude is the key to unlocking joy more abundantly in our lives. So, thank you for being here. I hope you come along, listen to the stories. I’m privileged to have you here as I sit with and listen to them myself as we record these podcast episodes. And remember that you’re not alone. I’m so glad that you’re here.
To learn more about the work we do with Mattea’s Joy, I do invite you to visit our website MatteasJoy.org, M-A-T-T-E-A-S J-O-Y dot O-R-G. And we are also on Facebook and Instagram, and I would love to hear and have you hashtag Joy in the Journey and share with us your joys, what you’re choosing joy about today.