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When Sydney’s son Walker was born with diastrophic dysplasia, a rare form of skeletal dysplasia, she lost hope for what the future might hold. In this episode, Sydney shares the challenges of receiving a diagnosis that few people — even medical professionals — truly understand, and how devastating it can feel when answers are nearly impossible to find.

We talk about the role of timing, luck, and connection — how one chance encounter, whether through social media or in daily life, can completely change the trajectory for medically complex kids. For Walker, finding a specialized team across the country opened doors that once felt firmly closed. He was even able to “graduate” from hospice care, bringing new hope and possibilities for his future.

Sydney and I discuss the realities of raising a medically fragile child, the deep isolation that often comes with it, and the difficult decision for Walker to live at a medical facility to manage his critical airway due to grade 4 subglottic stenosis. Still, amidst the hard days, they continue to create joy — from simple movie days at home to family outings at the zoo — giving Walker a full and happy life. Now, on the other side of that initial hopelessness, Sydney is passionate about encouraging and guiding others navigating their own complex diagnoses.

“The one thing I want people to know is that skeletal dysplasia is not a death sentence. Yes, there are health challenges and they’ll be smaller than everyone else, but they can still do everything — just a little differently.”

Thank you so much, Sydney, for sharing your remarkable story and experiences with us.

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When your child is critically ill, one of the hardest things to accept is how little control you have. Many people go their whole lives without facing that kind of powerlessness. For medical parents, it’s reality. So how do you begin to accept that and still move forward?

In this episode, I talk with Molly Trexler—a pediatric nurse practitioner, medical mom, and founder of Heartstrings, a coaching practice for parents navigating complex medical journeys. Molly helps families find clarity, confidence, and peace in the chaos by blending her clinical and lived experience with compassionate emotional support.

Together, we discuss:

• How to communicate effectively with your child’s medical team, even when emotions run high

• Why preparation brings peace—and how to let go of the rest
• The everyday stressors that pile up (insurance, finances, siblings, logistics) and how coaching can help lighten the load
• The importance of accepting help and building a trusted circle of support
• The Four Ps that guide Molly’s work: Pardon, Power, Peace, and Purpose

“This is a time in your life where you have permission to say, ‘I need help,’ and ‘thank you.’ And that’s it.”

I truly believe so many of us medical parents can benefit from this kind of thoughtful and informed support.

👉 To learn more about Molly’s coaching services, visit her Instagram https://www.instagram.com/mollytrexlercoaching?igsh=cTd2ajQ2cWNzcnk3 or her website mollytrexler.com, where you can watch testimonials from other parents who’ve completed her 9-step program.

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“You don’t even understand the gravity of what it means to have a premature baby. Then you have to explain to people that it’s not just a super small baby—it means they’re born with underdeveloped lungs, brain, everything.”

In this episode, Paige tells us what it was like having two high-risk pregnancies, and how we’ve adjusted to life as stay-at-home medical moms. We both had IUGR pregnancies, and we explain the challenges that come with that diagnosis—comparing our experiences, what we knew (or didn’t know), and how unprepared we felt when our babies were born.

Paige shares her son Graham’s story in detail, from his complex airway issues to the emotional rollercoaster of caring for a micropreemie with severe BPD and unexplained respiratory distress. Graham has undergone around 23 airway reconstruction surgeries, and Paige walks us through what that journey has looked like for their family.

She’s so down to earth, and her love for Graham shines through as she talks about how far he’s come. He’s been through so much—pulse ox 24/7, a ventilator, oxygen support—but now, he hasn’t needed any of it for almost two years, except when he’s asleep. She says he amazes them every single day.

We also talk about the line we walk as complex care parents—the constant balance of being grateful things didn’t turn out worse, while still grieving the more typical experiences we imagined. If you’ve ever felt caught between gratitude and grief, or alone in your journey, this conversation will absolutely resonate.

And if you hear us laughing at slightly inappropriate times… we had our youngest guests join us during this episode—Graham and Nora! 😆