Joy In The Journey

Even though symptoms and conditions are always unique, there is one thing most people who've recently been diagnosed with a difficult condition have in common: the search for hope and answers to many questions.

Today's guest, Jonny Imerman, has made it his life mission to bridge that gap; through his non-profit, Imerman Angels, Jonny has connected thousands of cancer survivors with recently diagnosed cancer patients. After getting diagnosed with cancer at 26 and going through years of complicated treatments and surgeries, Jonny found purpose and meaning in his traumatic experience by helping others.

Through Immerman's Angels, he helps those in the thick of it (including caregivers) navigate the uncertainties of a difficult reality, changing lives through human connection.

In this episode, we discuss the benefits of opening up during trying times, overcoming survivor's guilt, and the joy that comes from helping others. And as a helpful reminder: don't forget to schedule your annual check-ups, they could help save your life.

Key Takeaways with Jonny Imerman

• How yearly check-ups can save your life
• Finding purpose, meaning, and positivity in a difficult journey
• Spreading hope through survivor stories
• The life-changing power of genuine connection
• Seeking guidance through mentorship
• The joy in guiding others through difficult times
• Understanding survivor's guilt
• Opening up as a way to process a difficult experience
• Connecting with caregivers going through similar journeys

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/72.

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

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

During pregnancy, parents usually imagine what their child will be like and everything they'll get to do together. You get excited about all the traditional milestones and look forward to experiencing this new reality.

But for parents who receive difficult news after the birth of their child, such as an unexpected Down Syndrome diagnosis, this reality is shattered in a matter of seconds. Even the most understanding of parents are faced with grieving and adjusting.

Amy Julia Becker (an award-winning writer and speaker on Disabilities and Family) experienced this first hand at the birth of her first child, Penny. Today, Amy Julia is sharing her family's journey: from grieving the child they "thought" they'd be receiving, to adjusting to their new normal, to eventually realizing all the beautiful things that come from embracing our humanity as is.

In honor of Down Syndrome Awareness Month, Amy Julia shares useful tips on things she wished she knew when her daughter was diagnosed, and on navigating the nuances of raising a child with different abilities.

This episode is perfect for any parent who is currently feeling overwhelmed, alone, or nervous about their child's disability and I hope you or someone you love and you get a ton of value from it.

Key Takeaways with Amy Julia Becker

• The importance of Down Syndrome Awareness Month.
• Navigating a Down Syndrome diagnosis.
• Grieving and adjusting to the reality of parenting a child with disabilities.
• Finding community through shared parenting experiences.
• Dealing with pain, guilt, and shame as a parent of a child with a disability.
• Validating the feelings of parents going through disability journeys.
• Looking beyond the tragedy and negativity surrounding disabilities.
• Hierarchy vs Mutuality: an inclusive approach to disabilities.
• How to support your partner through a difficult diagnosis.
• The growth opportunities in every challenge.
• Accepting (and embracing) the uniqueness of every diagnosis.
• Focusing on the present in order to find joy.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/71.

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

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

I'm so excited to get season 3 of the Joy in the Journey podcast underway and I wanted to share a sneak peek with all of you.

If there's one thing that I've grown to appreciate after starting this podcast, it's the power of a shared story. And in season 3, I have an incredible array of inspring individuals lined up.

So enjoy this sneak peek and stay tuned for a new episode next week!

Don't forget to subscribe on Apple Podcasts, Spotify, Stitcher, or wherever you listen, so future episodes are automatically downloaded directly to your device.

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

If there's one thing that I've learned since starting this podcast, it's the power of sharing stories. And today's guest would wholeheartedly agree with that, as she's been helping women share their stories in powerful and meaningful ways for years.

Jenette Jurczyk is the National Director of the She Said Project and a Professional Storytelling Coach. She's also the co-founder and President of the Family Room, a non-profit organization that supports foster children and families in her community. She's also the host of the She Said Podcast, which features the women who have taken the stage, held the microphone, and shared their story.

In 2015, Jenette found her purpose and has been using her experience as an actor and director ever since to direct live performances and create a space where women are empowered to share stories they never thought they could.

Jenette has not only helped countless women, but she's also created That's What Teens Say, a 3-day program where teenage girls have the opportunity to have the same experiences, which is so important and brings joy to so many for all the same reasons.

As we wrap up season 2 of the podcast, I couldn't be happier to share this conversation with all of you and end the season on such a positive and uplifting note. In this episode, you'll get a glimpse of the tremendous impact that Jenette's passion has had on so many women, how her work allows women to give permission to themselves, the beautiful and moving stories that are shared, and how much joy Jenette receives in return.

Key Takeaways with Jenette Jurczyk

• The sense of relief you feel by sharing your story, listening to someone else's story and having an epiphany.
• How the power of the She Said Project gives women permission to talk about themselves.
• The importance of finding or creating a place to explore your thoughts on your own or through social media.
• The incredible story of Donna Jones and how much of an impact it's had on Jenette.
• The success of That's What Teens Say 3-day program for teenage girls and how important it is for young women to have the same experiences.
• The deep bonds that are created in spaces where you dive into the real life stuff instead of small talk.
• The pure joy that Jenette experiences every day by creating a space where women can share their stories.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/70.

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

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

I am so excited to share this conversation with you today. Today's guest exudes positivity and inspiration, and I truly hope you'll enjoy hearing his message as much as I did.

Kute Blackson is a transformational teacher, speaker, visionary guide, and national bestselling author of You Are the One and The Magic of Surrender. He also hosts the Soul Talk podcast and has dedicated his life to personal development, spirituality, transformation, and helping others navigate life's challenges.

Kute was born in Ghana and grew up in London, England. When he was just 8 years old, he had his first experience as a public speaker when his father told him to "speak" in front of the congregation at his church.

When he was 14, he was ordained and designated as his father's successor. A few years later, he made the difficult decision to walk away from the church to pursue his true calling in America, with two suitcases and $1,000 in his pocket.

You'll hear Kute talk about the courage and vulnerability that parents possess when navigating a difficult medical journey. And I know you'll just love his advice on how we can only serve others if we're true to ourselves, the magic of surrendering and focusing on what we can control and understanding that the greatest gift that we can give to our kids is to see them for who they are.

Kute is a wonderfully talented speaker, and I'm so thankful he shared his gift, knowledge, and inspirational story with us today. Enjoy!

Key Takeaways with Kute Blackson

• How faith and spirituality was instilled in Kute at a young age.
• The difficult decision Kute made to leave London and pursue his true calling in America.
• Everyone has to live their own life, even when it's against the advice of your family and friends.
• How we can only serve others if we're true to ourselves.
• Sometimes the advice we receive is from people who are unhappy and unfulfilled in their own lives.
• How you can't take people deeper than you've gone yourself as a leader
• You never know what someone is going through, so be grateful and show compassion to others.
• How courageous and vulnerable parents must be to support children on a medical journey.
• The greatest gift that you can give to your child is seeing them for who they are.
• The power of surrender

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/69.

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

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

If your child is in the hospital, there may be times when your motherly instincts kick in because you know that something isn't right. And as you'll hear from today's guest, there's nothing wrong with speaking up and advocating for your child, even when the medical teams tell you everything is fine.

Before Eunice Clay's son was born, all the tests were clear. Soon afterward, Jahari was having trouble breathing as there was fluid building up in his lungs. After further testing, Jahari was diagnosed with a heart defect called TAPVR. (Total Anomalous Pulmonary Venous Return)

Instead of his blood pumping back into his heart, it was only pumping into his lungs. This required immediate open heart surgery, with over 15 more of them to come, as Eunice watched her little kiddo live on a ventilator until he could have a double lung transplant. This meant that Eunice and her son would spend 46 weeks of his first year in the hospital.

She was told that her son would have a life expectancy of 7 years post-transplant. Miraculously, Jahari will celebrate his 19th circle around the sun this year.

Eunice shares two incredible stories of times when she knew something was wrong during that first year and used an advocate mindset to get the care that her child needed, despite the medical teams promising her that everything was okay.

You'll hear the importance of trusting your instincts, asking questions, and that it's okay to speak up when you know something isn't right. Eunice shares beautiful advice for friends and family who want to become advocates, the power of journaling while doing your own research, and what she's learned by seeing the world from her son's point of view.

Key Takeaways with Eunice Clay

• Why being a caregiver and advocating for children is more than a 24/7 responsibility.
• To never be afraid to ask hard questions to medical staff.
• How it's okay to do your own research, but use actual medical trials and not just Wikipedia
• The importance of journaling with your own situation as part of your research.
• It's a team effort, and parents and advocates are part of the team that is caring for fragile children.
• Always trust your instincts when you know something isn't right, even if the medical teams think it's fine.
• What Eunice has learned from this journey from her son's point of view.
• How much strength Eunice has found in her faith to help get through the tough days.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/68.

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

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

At the age of 16, Veronica Porter's son was in a tragic car accident that left him in a coma for three weeks. His brain injury resulted in permanent brain damage that has affected him and everyone around him in many ways. Still, his disability is not obvious or apparent to the naked eye.

Despite the injury, Veronica's son is a very high-functioning and capable young man whose symptoms only show up occasionally, leaving those around him who are unfamiliar with his story confused about his actions.

Today, Veronica shares the story of how she started a business designed to combine the benefits of eating healthy food with the importance of making every member of our society feel seen and included: especially those with hidden disabilities and our veterans with PTSD.

Through Ask Aunt V, Veronica teaches cooking classes that help others embrace the benefits of eating clean organic foods and uses those proceeds to grow food in Chicago. She employs people with hidden disabilities and veterans with PTSD, promoting a work pace that makes sense for them.

In our conversation, Veronica shares excellent advice on the impact we can have on other people's lives (both in our family and in our community), how to help children and adults with disabilities build their self-esteem, and how to support parents in our community caring for children with disabilities.

Key Takeaways with Veronica Porter

• Ways to provide care for a child with hidden disabilities.
• Veronica's vision on how to change the ways in which society handles hidden disabilities.
• How she is creating career opportunities for those with disabilities.
• The impact that clean, organic food has on your health.
• The impact that creating inclusion has in our community while breaking down barriers in communication.
• Making the choice to show up for others, and how easy it is to make someone feel better.
• Offering the gift of time, and listening without judgment or advice.
• How a strong marriage creates a strong family.
• Being present, and making space for flexibility and spontaneity.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/67.

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!

Raising a child with autism is a process that requires patience, resilience, and an information-seeking mindset. But as rewarding as the journey can be, an autism diagnosis can alter the family dynamic and impact each family member in many ways.

My guest today, Dr. Taylor Day, is a licensed psychologist who specializes in supporting autistic children and their families with diagnostic evaluations, therapy, and parent coaching. But she also knows firsthand the impacts of growing up with an autistic sibling.

Her compassion and understanding of her family's situation led her to a place where she could identify the gaps in the care of all family members. Her "whole family approach" uses a comprehensive model of care, including evidence-based interventions for autistic children and their siblings, and coaches parents to become more aware of their thoughts and feelings.

She explains the importance of filling our own cups before trying to pour out of them empty so that we can better model behavior and set boundaries for all of the children in the family.

In this conversation, Dr. Day shares invaluable advice on dealing with the grief of a difficult medical diagnosis, following your gut as a parent when dealing with teams of doctors, dealing with the overwhelm of caring for the whole family, and much more.

Key Takeaways with Dr. Taylor Day

• How families can support autistic children through evaluations & interventions.
• Acknowledging the needs of the siblings of a sick child.
• How the "whole family approach" model of care works.
• The power of listening as a way to show support.
• Tips for parents to deal with overwhelm.
• Managing the grief, shame, anger, or denial that accompanies a difficult diagnosis.
• Following your gut instincts as a parent, and requesting second opinions.
• Why spending quality time with the siblings matters more than quantity.
• Setting boundaries for children in the home (including neurodivergent children).

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/66.

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

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

If raising a child takes a village, parents can use all the help they can get when navigating a difficult medical journey. But between medical teams, family, friends, and all the different groups of people that come together in order to provide the care needed, a lot of informational gaps can get left behind.

From splitting time between the hospital and your family at home to preparing for discharge and transitioning home with (potentially new) medical equipment, it is quite easy to feel overwhelmed as a caregiver.

That's why Child Life Specialists like Caitlin McNamara dedicate their career to helping families bridge those gaps: they walk along with them on the journey and assist whenever possible by providing guidance and advice that could otherwise be hard for caregivers to find.

And while we firmly believe that every hospital should have Child Life Specialists available, it's unfortunately not the case yet. This is why Caitlin and her team created Child Core: an online coaching program dedicated to becoming an integral part of families' support systems.

Today, Caitlin shares with us incredible advice on creating plans for difficult moments or transitions in your journey, finding your community, and understanding the uniqueness of each journey.

In the "Resources" section below, you'll also be able to find Child Core's free resources. These were designed to offload some pressure off of caregivers by providing guidance on using medical equipment, providing checklists to take to appointments, and much more.

Key Takeaways with Caitlin McNamara

• The benefits of adding a Child Life Specialist to your support team.
• Navigating a difficult medical journey with your child as a caregiver.
• The impact of the journey on caregivers, siblings, and the child.
• Advice on creating your "village" or community, and how to ask for help.
• Preparing for the complexities of a transition home (discharge).
• Free resources that can help parents who are feeling overwhelmed.
• Remembering that what worked for others may not work for you.
• How needs may change with time, and how to process these changes.
• Finding a balance between caring for your child, your family, and yourself.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/65.

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 Kendra Regas' son Andon was 5 years old, he had already been dealing with several allergies, including a peanut allergy. That in itself would be plenty for any parent to worry about.

Shortly after having his tonsils removed, Andon started wetting the bed. Soon afterward, Kendra booked an appointment to meet with the doctor. After describing the symptoms, the doctor said, "I think I know what it is, but I just hope it's not."

This led to many more tests, including spending 3 days in the hospital until it was confirmed that Kendra's son Andon had Type 1 Diabetes. And with Type 1, this meant that Andon would need insulin for the rest of his life.

You'll hear Kendra talk about how managing Type 1 Diabetes with a child and their siblings is like a family disease because it impacts the entire family. Any parent will tell you that kids love to have snacks. But with a child with Type 1 Diabetes, even the type of snack matters. Meals need to be structured at set times, and being aware of who is having a snack and when they're having a snack has its own set of challenges.

But you'll also hear how much her family, including Andon's siblings, have embraced the diagnosis. She talks about how they have become advocates for other Type 1 Diabetic kiddos and how much they enjoy teaching others about what a day in their life is all about, which is just heartwarming.

Kendra and her family have a beautiful story to share, and I hope you enjoy hearing it as much as I did.

Key Takeaways with Kendra Regas

• How receiving a Type 1 Diabetes diagnosis quickly changed their world.
• The importance of keeping structured meal times and not eating whenever and whatever they want.
• Dealing with the amount of attention that Andon receives in comparison to the other kids.
• The difficulty in managing a child's temptation to have extra snacks or candy.
• Finding comfort with other groups and families who are managing the same circumstances.
• The joy in seeing Andon and his siblings advocate for Type 1 Diabetics and their willingness to share and educate other kids their age.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/64.

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!