Caring for a newly diagnosed child going through a medical journey can be scary and overwhelming. Especially when finding resources meant to support you, like Child Life Specialists, requires extensive research and planning.

This is why I am so grateful to our guest today, Jenna Kmitch, for courageously sharing what her process looks like beside her daughter Sydney, who was diagnosed with neuroblastoma just a few weeks after birth.

Jenna is the founder of Love Smiles, an organization dedicated to bringing moments of peace and joy to families with pediatric cancer through stories.

Today, she shares her experience and advice on navigating surgeries, treatments, PICU stays, and returning home and how to enjoy parenthood through it all. Jenna found joy in her journey by leaning on her baby's resilience and the community and medical staff that showed up for her, and she hopes to inspire others to do the same.

Key Takeaways with Jenna Kmitch

• The challenges of becoming a mom during a pandemic
• Navigating a baby's cancer diagnosis
• Processing the risks & results of infant surgery
• The role of child life specialists in the PICU
• How to lean on nurses and doctors for additional support
• The stages of grieving a diagnosis
• Finding yourself as a mom during caretaking

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/82.

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When you first enter the medical world as a caregiver, everyone around you hits the ground running. The nurses and doctors know exactly how to get started, and yet, you might be left feeling overwhelmed and powerless.

This is what makes social workers so important: they support the family holistically, encourage communication, help bridge information gaps, and empower you to become an important member of your child's medical team.

My guests today, Henry Rosh and Megan Keeler, are both social workers at Lurie Children's Hospital of Chicago. Henry works with families who have extended admissions in the heart center, and Megan extensively prepares families for admissions and hospitalizations in the epilepsy center.

They are the superheroes in a medical team, meeting families where they are and making their experience in the hospital remarkably better. In our conversation, they're sharing their best advice on communicating with your medical team, building relationships with nurses, and participating in your child's care so that you can feel more comfortable and better informed on the next steps in your journey.

Key Takeaways with Henry Rosh & Megan Keeler

• The impact of social workers on medical journeys
• How they make hospitals less intimidating for families
• What is Psychosocial Support?
• Encouraging communication with medical providers
• The role of families in the medical team
• What to expect from bedside nurses, providers, & physicians
• Getting involved in your child's care both in-person & remotely
• Having confidence to challenge & question medical plans
• Building a two-way relationship with nurses

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/81.

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!

After losing someone close to us we are usually told about the five stages of grief and how each of them will show up. But grief often shows up differently for everyone, skipping and cycling through stages in unique ways.

My guest today is Sara Ward, and she knows a thing or two about grieving. After unexpectedly losing her father to a heart problem as a teenager, her 9-month-old adopted son was diagnosed with a rare and terminal disease and given a very short time to live.

Instead of choosing to focus only on the hardships of grief, Sara committed to looking for unexpected gifts in her journey. Since then, she's written a book titled, Made for Hope: Discovering Unexpected Gifts in Brokenness, which is aimed at helping others navigate their grief journey. She's sharing her story on how community, faith, hope, and gratitude got her through some of the hardest challenges of life.

This episode is perfect for anyone who's in the thick of their grief journey or knows someone who is to feel less alone in this very difficult season of life.

Key Takeaways with Sara Ward

• Processing grief as a child or teenager
• Dealing with a sudden and unexpected loss
• How the stages of grief are unique for everyone
• The anticipatory grief that comes with terminal illnesses
• Seeking help through grief groups
• The importance of rest for caregivers
• Leaning on faith & community
• When parents have different coping mechanisms
• Feeling guilt after the loss of a child
• Focusing on the blessings in the midst of pain

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/80.

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!

We've all experienced those days where it feels like we catch every red light on a busy commute and nothing seems to be going right. But what happens when we're intentional about stopping to look for the small glimmers of joy, even in those heavier days? Allow me to introduce you to today's guest to answer that question.

Gina Prosch is a writer and teacher who has made it her mission to help children and adults find joy in even the most difficult days. Her childrens books are perfect for little ones who may be experiencing a harder season of life, and provide parents with inspiring ways to keep hope alive.

In our conversation, you'll hear a few ways you can train and reframe your mind to look for the joy around you, reflect on your past experiences, and tools to guide children through failures and tough challenges.

Key Takeaways with Gina Prosch

• Finding hope during a tough time
• Establishing healthy gratitude and accountability habits
• Training and reframing your brain to look for joy
• Tips to navigate a harder season of life with optimism
• Helping children grow through mistakes and failures
• The difference between positive and negative instruction
• Shifting your mentality from "I have to" to "I get to"

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/79.

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!

Juli Boit is no stranger to helping those in need. She's an author, family nurse practitioner, and international non-profit director of Living Room International, dedicated to providing palliative care services to adults and children in western Kenya.

After going through an adoption journey with her son Ryan, whose parents had recently passed, and consequently adopting his siblings, she found herself needing some help of her own when two of her kids required transplants far from their Kenyan home.

These transformative experiences made Juli see her work through a different lens: that joy can be found in both giving and receiving and that without the pain, we cannot experience joy.

Today, Juli is sharing her experience in the hopes of making someone else's journey of navigating children's treatments, ICU admissions, and surgeries feel a little more manageable.

Key Takeaways with Juli Boit

• Navigating an international adoption process
• How motherhood changes your perspective on helping others
• The importance of community & the feeling of belonging
• Creating community in a new phase of life
• Asking for help when you feel vulnerable or scared
• Guiding others through shared experience
• Making room for grief to experience joy
• Practices to help you feel present and grounded
• Navigating a transplant and ICU journey
• How traumatic experiences affect your faith
• Welcoming people who feel like they've never been welcome anywhere

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/78.

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!

Sarah Falk has received more than a few extremely scary cancer diagnoses in her life: the first one at only 17 years old (bone cancer) and the second at 40 years old (breast cancer). Naturally, she found herself asking, "Why Me"? But as you'll hear, a better question to ask yourself is, "What now?"

Sarah is a mom to 4 boys, a mental health therapist, an author, and 4-time cancer survivor. She has taken her traumatic experiences and used them as a source of deep understanding of the challenges these diagnoses come with. Having specialized in anxiety, panic, and trauma, her work is particularly focused on a treatment called Accelerated Resolution Therapy.

Today, Sarah shares her best tips on redefining life post-diagnosis, dealing with grief, healing your mind, and connecting with others. You'll hear how she helps those facing similar challenges embrace their situation and find joy by choosing to see the miracles around us.

Key Takeaways with Sarah Falk

• The impact of caring and involved social workers
• Dealing with a difficult diagnosis as a teenager
• Redefining life post-diagnosis (adjusting to difficult life changes)
• Getting involved with the hospital community as an in-patient
• How to support someone who is in the hospital
• Shifting your mentality from "Why me?" to "What now?"
• Healing anxiety through mind, body, and spirit practices
• Sharing your journey to support and connect with others
• Explaining your diagnosis to your children
• Learning to pause when possible (breathing & journaling)

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/77.

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 today's guest will tell you, "You become a NICU parent in the blink of an eye."

Katie Ross is the creator of Blooming Littles and she's doing incredible work in the NICU space as a certified neonatal occupational therapist. As a mom of a full-term NICU baby herself, she's made it her mission to inform and empower parents by teaching them about the little things they can do that make a difference in their baby's development and truly transform their NICU experience.

By combining her doctorate with additional certifications, including neonatal massage and lactation support, her clinical experience at large children's hospitals has given her a unique understanding of the challenges and needs of NICU babies.

This episode is perfect for anyone who is currently in the NICU, has experienced the NICU, or knows someone else who's on their own journey. Katie shares her best tips on participation (skin-to-skin, hand hugs, etc), managing trauma & pain responses, and setting healthy boundaries.

Key Takeaways with Katie Ross

• Understanding the importance of occupational therapists
• Empowering parents in the NICU
• The power of touch: skin-to-skin, hand hugs, and more
• Creating positive moments within the NICU experience
• The coping and trauma responses of families
• How to feel confident after discharge and bringing your baby home
• Bedside questions that parents should ask providers
• Giving yourself grace in a difficult season of life
• Learning to protect your (and your family's) peace
• Ways to support parents through acts of service

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/76.

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

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

How are parents meant to believe that the loss of a child is all part of God's plan?

Grief is a difficult journey for everyone, but it can feel especially challenging when it's accompanied by a feeling of losing yourself or your faith. My guest today, Emily Ann Adams, had this exact experience after the passing of one of her twin boys, Aidan.

Faced with three little children under 5 to look after, including Aidan's brother Alan who was born at 32 weeks, Emily made a courageous decision; to dive deep into her grief to understand it better.

In the process, she helped dozens of other families navigate their own grief through her incredibly moving book: Is There No Other Way?: Exploring Growth Through Grief.

This episode is vulnerable, raw, inspirational and serves as a reminder that our faith is something we can choose every day. Emily's advice reminds us of the power of connecting with others while respecting that everyone experiences grief differently.

Key Takeaways with Emily Ann Adams

• Grieving the loss of a baby during pregnancy
• Twin-to-Twin Transfusion Syndrome
• Navigating the loss of a child, especially a twin
• Losing your faith through the loss of a child
• Learning from the pain and choosing to believe in a reason
• The importance of respecting others and their choices
• Finding connection through shared experiences
• Establishing time limits to talk about grief
• Using journaling and writing as a healing tool
• How to rediscover hope while healing
• Change the lenses through which we view our experiences
• Finding gratitude in the lives we have
• Finding utility in pain and turning it into a tool

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/75.

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!

One of the only certainties about having children is uncertainty: we can't find out beforehand how a pregnancy or birth experience will go, or who our children will grow up and become. Add in a premature birth, an illness diagnosis, and a NICU stay to the mix, and it can lead to overwhelming worry and anxiety.

My guest today, Meg Helgeson, is certainly no stranger to this. Her twin girls Ellie and Leah, who are now healthy 12-year-old girls, had to be flown to the NICU at Comer's Children Hospital at only 5 days old to receive a meningitis diagnosis.

Looking back, Meg is now able to share her advice for parents going through similar situations: from the nerves of discovering you are having twins, to the heart-wrenching experience of caring for them in the NICU. She shares helpful tips on allowing others to be there for you, remembering to care for yourself, managing expectations, and dealing with overstimulation.

If you're a "recovering perfectionist" trying to balance that with the beautiful chaos of parenthood, then this episode has some goodies for you.

Key Takeaways with Meg Helgeson

• The highs and lows of finding out you're having twins
• Setting healthy boundaries throughout pregnancy
• Managing and grieving pregnancy & birth expectations
• The importance of accepting help from friends and loved ones
• Taking care of yourself through the NICU journey
• Accepting that it is normal not to know everything
• Avoiding comparison in the NICU
• Treating siblings (especially twins) as separate individuals
• How nursery nurses make the experience less daunting
• Celebrating non-traditional milestones to help find joy
• Dealing with overstimulation around small children
• Letting go of perfectionism
• Giving yourself "second chances" to get things right

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/74.

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 a parent learns that their child has been diagnosed with a serious illness or condition, it's difficult not to be consumed with worst case scenarios.

But as Bekah Bowman will tell you, you have two choices: either allow your past and future to steal joy from your present, or embrace joy in the present moment, no matter what it looks like.

And Bekah is no stranger to this concept: her two boys, Titus and Ely, were both affected by a rare genetic disease (CLN2) that leads to the quick loss of skills and eventual passing in childhood.

After her oldest son passed away Bekah wrote Can't Steal My Joy, a book dedicated to helping those whose life path has taken an unexpected turn to rediscover joy.

Today, Bekah shares some of her strategies on how to manage anticipatory grief, learning to make the best of the present, the importance of making time to grieve, leaning on your faith, and the power of acceptance.

Key Takeaways with Bekah Bowman

• Ways to process a difficult diagnosis
• Managing anticipatory grief
• Learning to focus on the present & enjoy each moment
• Dealing with feelings of numbness
• The power of acceptance and embracing joy
• Why you should consider scheduling "grieving sessions"
• Leaning on your faith through grief
• The importance of honoring date nights with your partner
• Finding community in extended family and friends
• Learning to flex your "Joy Muscle"

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/73.

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!