Joy In The Journey

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.

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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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.

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!

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.

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 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.

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 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 [email protected])

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

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!

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

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!

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

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 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

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 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

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 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

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!