Joy In The Journey

When Savannah Zirbel was only two and a half years old, she lost her left leg and arm in a terribly unfortunate accident. In the blink of an eye, Savannah and her family's world was turned upside down as they were left to learn how to navigate life with a disability as their new normal.

What they didn't know was how powerfully inspiring and transformative this journey would turn out to be: Savannah refused to let her disability define her, pushing past every limit she encountered to prove to herself and others that she could accomplish whatever she set her mind to.

Savannah is a teenager now and recently finished first in SIX different state swimming events which is just incredible. She'll be competing in the nationals in just a few weeks with her eyes set on swimming her way to another title. As you can imagine, Jennifer is a very proud mama.

I invited Savannah and her mom to join me on today's episode to share their inspiring advice on keeping a positive outlook throughout adversity, the best ways to approach people with disabilities, and how Savannah has already become a mentor to others.

Jennifer and Savannah remind us of the importance of community and friendship, how most of our limits are in our minds, and how a slight shift in perspective can go a long way in finding joy in your journey.

Key Takeaways with Jennifer & Savannah Zirbel

• Not letting a disability define you, or what you can accomplish.
• Finding motivation and strength from both people who believe in you, and people who don't.
• Letting go of control and taking leaps of faith as a parent of a child with a disability.
• The best way to approach and interact with people with a disability.
• How they're others about life with a physical disability, and encouraging them to ask questions.
• The importance of keeping your faith through hardships.
• How to shift your perspective to a more positive one throughout adversity.
• The growth you experience when navigating a difficult medical journey.
• The power of community and great friendships.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/63.

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

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

I'm so excited to welcome Joy Harmon back to the podcast, as this will be the first time I've had a guest on the show for a second time!

It feels even more appropriate when you consider that Joy had not one, but two NICU journeys with her daughters. And I'm very happy to say they are thriving right now. Joy is also a breast cancer survivor who underwent treatment at the beginning of COVID when everything changed for everyone. What she has done since then is truly remarkable.

For any parent going through a medical journey, there's a tendency to tell people, "I'm fine," when the reality is, everything is anything but fine. With so much going on back then, needless to say, it was a challenging time. There were so many unknowns with the pandemic and her cancer treatments, but you'll also hear how much her daughters struggled with the transition of returning to school after spending so much time together at home. I'm sure most parents can relate to that.

Thankfully, Joy had a great support system during that time in her life, and you'll hear just how instrumental it was for her to get through it all and the lessons that her daughters have learned from this experience.

Perhaps most importantly, Joy talks about the need to give back and how the idea for her wonderful non-profit, Bringing JOY, came to be. Her charity now serves 9 cancer centers, honors the vets on Veterans Day and supports Breast Cancer Awareness Month by bringing a little JOY to others that are going through so much.

Her efforts are definitely helping others to know that they are not alone, letting them know that others are thinking about them… One Little Bag at a Time. I hope you'll love hearing her story and what she has accomplished as much as I do.

Key Takeaways with Joy Harmon

• Dealing with cancer treatments and raising two daughters when COVID hit.
• How difficult it was for her daughter to go back to school after spending so much time at home during the pandemic.
• The aftermath of how the unknowns of COVID and a cancer diagnosis impacted her kids.
• The feeling of always waiting for the other shoe to drop after having gone through so much.
• The importance of having a network of friends and family to support you during the really difficult days.
• How beautiful it is for kids to see that sometimes we need help at such a young age.
• How Joy is teaching her kids that when help is given, there is a time to give back and support the ones who helped you.
• The immense support that Joy received from the beginning of her non-profit, Bringing JOY.
• How important it's been for Joy to stay involved with the world of cancer foundations.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/62.

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

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

There truly is nothing more moving than seeing parents who have experienced the loss of a child look for meaningful ways to celebrate their child's life. Some say grief is love with nowhere to go, and channeling it toward honoring a loved one can be a beautiful way to heal and find joy in the journey.

I invited Lacey Bracken to join me on this episode and share the story of her beautiful family. Lacey is a mom to four little girls, including Finley, their 3-year-old daughter, who tragically lost her battle with cancer; Lacey has found incredible ways to celebrate life and pay it forward.

Shortly after Finley's passing, the Brackens founded the Finley Forever Foundation, whose primary goal is to provide "hope, support, and financial assistance to families and children affected by cancer."

From throwing Finley a yearly charitable birthday party (the Finley Fest), with which they've raised over $80,000, to the Lights & Ladders Brigade (a team of volunteers that lights up the homes of families battling cancer on Christmas), they've touched the hearts of hundreds of families and kept Finley's spirit alive.

Join us on today's episode as we discuss dealing with a childhood cancer diagnosis, managing jobs/children/tasks while caring for a hospitalized child, finding support and asking for help, and many other helpful topics.

Key Takeaways with Lacey Bracken

• Managing work, family, and other tasks while caring for a hospitalized child.
• Finding ways to stay calm through difficult moments and decisions.
• How reaching out to families walking a similar path can be incredibly helpful.
• Dealing with the loss of a child, and how to avoid letting grief consume you.
• Celebrating life and honoring loved ones that are no longer with us.
• How paying it forward can help you heal.
• Finding the balance between "good" and "bad" thoughts.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/61.

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

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

As you can imagine, today's guest is a very special one. For anyone who has been following the podcast, the truth is I haven't had many guys on the show. But that doesn't mean it's because the male perspective is any less important.

That's why I'm so happy to finally introduce you to my husband, Gary Freedlund. We've talked about doing an episode on the podcast together many times, but he wasn't quite ready to share his side of the story... until now.

For those that don't know, Gary has worked as a Child Life Specialist in a pediatric oncology outpatient clinic here in Illinois. And as such, he has a bit of a different perspective working with families that are going through a medical journey since he's been on both sides of those life-changing events.

So today, Gary shares the Freedlund family journey with Mattea Joy from a Dad's perspective. You'll hear what it was like to deal with our new normal when she was diagnosed with Down's Syndrome and what those 9+ months were like for him.

He also talks about how important it was to make sure our oldest daughter Reese had as much of a normal life as possible. From making sure she ate supper at home and slept in her own bed every night to also being strong and trying to keep things together for the family.

You'll also hear how his perspective changed once he understood that families with other kiddos can't always be together at the hospital because, as we all know, there are bills that still need to be paid.

I hope you'll enjoy this conversation with the man I've shared so much with on this incredible journey and that you'll share it with the man in your life.

Key Takeaways with Gary Freedlund

• How difficult it was to just trust the advice from doctors in his role as the parent and not a medical professional.
• The realization that the meaning of Mattea's name was "gift from God."
• You always get to decide what your new normal looks like.
• Not everyone is going to be able to support you the way that YOU want them to.
• How important it was to keep a normal life at home for their 2 year old child while spending so much time at the hospital with Mattea.
• Staying strong as the provider while also having the ability to be in touch with your emotions.
• Seeing the miracles that are happening around you that you're not focusing on during a medical journey.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/60.

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

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

"Changing lives one baked good and one scoop at a time."

One of the first milestones a new parent looks forward to is their child's first word.

But when Jolene Boothe noticed that her sweet son, Darren, hadn't started talking by the time he was 18 months old, she began to worry. By the age of two, they were still waiting. And if that wasn't stressful enough, she was pregnant with her twin daughters by that point.

They say it takes a village to raise a child, and those words couldn't be more accurate when you're a parent with a special needs kiddo.

In today's episode, Jolene shares how challenging those first few years of motherhood were. From dealing with the unknowns of what was wrong with her first child, finding testing and treatment for her son, the stress of bringing twins into the fold, and coming to terms with the fact that her life was going to be different.

Jolene talks about how she found beauty in her grief and knew that God wouldn't give her more than she could handle. You'll also hear how this experience has made her humble and grateful for Darren and all the families facing similar challenges.

But above all else, you'll love all the great things she's doing with her bakery, Sweet Darren's, changing lives one baked good and one scoop at a time.

Key Takeaways with Jolene Boothe

• The stress of realizing Darren wasn't talking while she was pregnant with twins.
• Comparing your struggles to another family's struggles is natural but your challenges still matter..
• The peace from knowing the special needs of her child wasn't life threatening, like a cancer diagnosis.
• How Jolene came to terms that her life was going to be different than she imagined
• How you can still find beauty in moments of grief.
• The positive impact that she is making with Sweet Darren's baked goods.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/59.

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

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

Friendly Warning: The content in this episode may be difficult for some listeners

In recent years we've seen a big shift toward mental health awareness, but unfortunately, our society doesn't always acknowledge mental health in the same way as physical health.

I am so grateful to have Kathi Meyers on the podcast today as a powerful reminder of the things we can do to prioritize our family's mental health.

Kathi and her husband, Brandon, have their hearts rooted in service. Their commitment is towards ending the stigma associated with mental health issues through education & changes in public policy. Together they started the Samuel R. Myers Foundation for Suicide and Mental Health Awareness in 2017, shortly after their 19-year-old son's suicide.

Kathi has worked in the medical field for nearly 30 years, while Brandon has worked for more than 26 years in law enforcement. Their personal and professional experience provides a unique insight into mental health challenges.

They remind us that mental health does not discriminate and can affect even the most involved, caring, attentive, and close-knit families from healthy homes.

By sharing Sam's story, Kathi provides incredible guidance on different resources available to parents and caregivers, the various steps they took towards finding help for their son, the obstacles they had to overcome, as well as the social pressure their son felt while navigating OCD, intrusive thoughts, anxiety, and even digestive issues.

Kathi also shares difficult but heartwarming advice on dealing with the aftermath of a traumatic event like her son's passing, including her journey with post-traumatic stress disorder and situational grief.

Hearing a story like Kathi's can be difficult for some, but it is an important and eye-opening conversation that will leave you with a few helpful tools that may one day help you or someone you know.

Key Takeaways with Kathi Meyers

• Prioritizing mental health at the same level as physical health.
• Ending the stigma associated with mental health through education & public policy.
• Mental health does not discriminate, and can affect anyone.
• Great resources for parents and caregivers of children with mental health issues.
• How mental health can affect the whole family.
• The power of local communities, and supporting those struggling with their mental health.
• How to deal with post-traumatic stress disorder & situational grief.
• Movements & policies that are changing mental health awareness.
• Creating beauty from ashes: moving forward from a tragic event.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/58.

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

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

During his time in college, Dan Rubins wanted to get involved in a music program, but he found that many of them were generating competition among students, and he was seeking connection and community.

And so, Hear Your Song was born: a non-profit serving kids ages 6 to 18 with serious illnesses and complex health needs to make their voices heard through collaborative songwriting.

Based in NYC but available virtually nationwide, Hear Your Song helps children with a wide range of physical and mental-health-related diagnoses share their medical journey or emotions through song. It is a child-driven process where children share what they want and choose how to define themselves.

From silly songs to emotional songs, from explaining the journey of a particular illness to songs about inequality, the children Dan and his team have worked with never fail to impress with their creativity, maturity, and determination.

This project helps children feel empowered and in control of what is usually an uncontrollable and disheartening situation. Today, Dan has joined me on this episode to share more about his work, how you can use music as a tool, and how you can get involved in this beautiful project.

I highly recommend checking out their YouTube channel to listen to many beautiful and moving songs they've created alongside these brave children.

Key Takeaways with Dan Rubins

• The power of music for personal development.
• How music is used as a learning and advocating tool.
• How children with a diagnosis are empowered to define themselves outside of their disease.
• The beautiful ways that Hear Your Song has provided an emotional outlet for children in difficult medical journeys.
• The connection and relationships that are being built with others who are on similar journeys.
• Why creating a safe and empowering environment for children to find their voice is so important.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/57.

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

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

Time passes very slowly when you're in a hospital waiting for updates on your child's surgery. But for Jennifer Fortin, seeing the Facebook updates on her phone in the hospital waiting room opened up a floodgate of tears.

People from all over their community had started the hashtag #CarterStrong for their little boy, posting blue hearts, buying t-shirts, and sending prayers. And at that moment, Jennifer understood the complex ways in which people come together in moments of need.

Carter is now a strong and happy 10-year-old boy, but when he was 7, he was diagnosed with a brain tumor which turned into a brain cancer diagnosis. Brain surgery successfully removed the tumor, and after several rounds of radiation and chemo treatments, he finally got the "all clear."

But the journey this family embarked on has taught them resilience, strength, the power of community, courage, and the impact of helping others in small ways.

Today, Jennifer joined me on this episode to share some wonderful tips for parents currently in the thick of their journey or for those of you supporting a family. From how to find your community to how to source strength and ask for help, Jennifer reminds us that "the more you look for your blessings, the easier it is to see them."

Key Takeaways with Jennifer Fortin

• The challenges in processing a difficult diagnosis.
• Supporting your children during hard medical journeys.
• Balancing care between the siblings at home & your hospitalized child.
• How others can support families in small yet helpful ways (laundry, cleaning, meal trains, a coffee)
• Why sharing your story with others can help you or another family.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/56.

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

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

When Shelly and Chad's little girl, Maddie, was diagnosed with a brain tumor at 9 years old, their regular lives with their five children were put on hold. Getting Maddie through surgery became their number one priority, and their family, friends, and neighborhood rallied together to help their family through it.

But one person in particular, Shelly's cousin, embodied what it truly means to show up during difficult moments in small but meaningful ways. It all started when she posted a silly picture of herself wearing a mustache, which was sure to make Maddie giggle, with the hashtag #MustachesforMaddie. And while she couldn't have predicted how viral this movement would go, her small act of kindness is the perfect example of how simple it can be to show up for someone.

As the hashtag gained traction, an outpouring of love happened from hundreds of people who sent funny little pictures for Maddie to enjoy. From putting mustaches on babies, cars, pets, stuffed animals, entire offices worth of doctors, classrooms, and more, even news stations picked up the story (including CNN and the Hallmark Channel).

Shelly and Chad transformed Mustaches for Maddie into an award-winning book. They share great insights on handling the pressure parents feel during this time, managing the day-to-day, asking for (and accepting) help from others, and dealing with the uncertainties of a difficult diagnosis. And today, they're sharing their story to inspire anyone going through a difficult journey.

This episode is fun, inspiring, and uplifting, and I hope it serves as a great reminder to keep spirits up and celebrate every little win along the way. As they say, laughter really is the best medicine.

Key Takeaways with Chad Morris & Shelly Brown

• The pressure on parents to care for a sick child, alongside other responsibilities.
• Dealing with the uncertainty of a difficult diagnosis.
• Managing the impact that a difficult medical journey has on siblings with feelings of jealousy, frustration, sadness, and anxiety.
• When to ask for help, and how to accept help from your community.
• The little ways anyone can show up and support those in need.
• How a small act of kindness can go a very long way.
• Keeping the spirits up, and looking out for moments of joy.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/55.

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

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

Advocating for our children is one of the most important parenting tasks there is; but it is one that becomes many times more challenging when it comes to children with special needs or going through difficult medical journeys. And when your child is diagnosed with a disease so rare that only a few other children in the entire world have been diagnosed with it, the process becomes much more challenging.

I'm so happy to have Cari Desiderio on the show to share her best tips on advocating for children with special needs, as she is no stranger to the rare disease world. Her little angel Hannah is a miracle baby who at 1.5 years old was diagnosed with CDK13: a very rare genetic condition characterized by congenital heart defects, intellectual disability and characteristic facial features.

With very little research available on this condition, Cari and her family were faced with the reality of navigating through the unknown. Traditionally, doctors and their teams take charge in caring for our children. But in their case, Cari had to take many matters into her own hands.

Today, she's sharing with us how she helped shape Hannah's care, education, and overall well being. You'll hear how she found the strength and courage to speak up, how she connected with families with common stories for support, how she found time for self-care, and much more.

I just loved how Cari describes parenting a child with special needs as an almost entrepreneurial role: you have to be fierce, network, connect, ask for help, and be resourceful. She reminds us to care for ourselves during the process to avoid burnout and celebrate every little milestone to add some joy to a challenging journey.

Key Takeaways with Cari Desiderio

• The best ways to advocate for your child's (medical) needs.
• How to find support in families with common stories and how to reach out.
• Finding the courage and strength to navigate the unknown.
• Having an entrepreneurial spirit with your child's care.
• The importance of self care: maintaining your own health and avoiding burnout.
• Adapting to your new reality, and dealing with the grief of "what could have been".
• Creating moments of joy by celebrating the little milestones and accomplishments.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/54.

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!