Our Story: Ryder and the Space Between Breaths

In this first episode of Between Breaths, Courtney shares the story behind her son Ryder’s pediatric lung transplant, and the space between fear and hope that defines this journey.

From the moment transplant became real, to the waiting, the uncertainty, and the quiet strength it takes to survive it, this episode is an honest look at what life before and beyond transplant really feels like.

This is not medical advice.
 It’s lived experience.

If you are a parent navigating pediatric lung disease, waiting for transplant, recovering post-transplant, or grieving a loss .....this space is for you.

In this episode, Courtney shares:
 • When transplant stopped being “someday” and became urgent
 • What the waiting does to a parent’s heart
 • The loneliness no one talks about
 • Holding grief and gratitude at the same time
 • Why Between Breaths was created

This podcast exists to hold space and community for families walking through pediatric lung transplant:  the fear, the strength, the losses, and the miracles.

You are not alone here.

Follow the show so you don’t miss upcoming conversations with transplant families and professionals who understand this world beyond statistics.

Between Breaths is a space for families walking through pediatric lung transplant.  The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.

We’re in this together.

Transcript

Hi, I'm Courtney, I'm a mom who walked through pediatric lung transplant with
my son Ryder. And before we go any further, I want to say this clearly. This podcast is not
medical advice. It's lived experience. It's emotional truth. It's a space for support. If you're
listening right now, chances are you're either waiting, healing, or grieving. Maybe all three at
the same time. And I want you to know something from the very beginning. You are not alone.
This podcast is called Between Breaths because that is what this journey feels like. The
waiting between appointments, the silence between phone calls, the pause between hope and
fear, and the space between one breath and the next. And if you're living in that space right
now, I see you. When we were going through this, I searched everywhere. I googled until two
in the morning. I read medical journals, I barely understood. I went down rabbit holes that only
made the fear louder. I asked the doctors because of course I did and they gave me what they
could. Clinical answers. Statistics. Risks. Probabilities. Numbers. But what I needed wasn't
clinical. What I needed was someone who had lived it. I needed another mom who could tell
me, this part is terrifying. This part is normal. This part might break you, but you will get
through it. And I couldn't find that space. There are incredible medical resources out there.
There are support groups, mostly for adults, but none for pediatric lung transplants. There
wasn't a space that held both the medical reality and the emotional truth. There wasn't a place
where someone could say, I'm grateful, but I'm also devastated. I'm hopeful and I'm angry. I'm
strong, but I'm barely holding it together. So I decided to build it. And that's why Between
Breaths exists. Let me tell you about our story. Now, I won't tell you every detail today. There
will be a time for that. But I want to tell you about the moment transplant became real. For a
long time. Transplant was something down the road. It was something doctors mentioned
carefully. It was something we tried not to fully look at. And then one day, it wasn't theoretical
anymore. It was real. It was staring at us in the face. Our doctor said words like listing. It was
conversations about survival rates, which in another episode we will go over because they are
surprising. There was signing papers that felt impossible to sign. There was a moment when
you realize this is no longer about managing. This is about saving your child's life. The waiting
was its own kind of trauma. Waiting for the call, waiting for numbers. Waiting for scans.
Waiting. Waiting for something to change. There were days I held my breath without realizing
it. There were nights I would stare at him sleeping just to make sure his chest was still rising.
And to be honest, I still do that. No one prepares you for how lonely it can feel. Even when you
are surrounded by people who love you, there are moments in hospital rooms that are so
sacred and so heavy at the same time. Moments where fear and hope exist in the same breath
that surprised me. I thought it would be one or the other, but it's both. It's always both. You
know what broke me? The uncertainty. The lack of control. The realization that love does not
guarantee safety. You know what held me together? Ryder His strength, his resilience. The
way children fight without even knowing they're fighting. And the small community of people
who showed up in the most quiet of ways. The meals, the texts, the sitting in silence. You find
out very quickly who can sit in the hard. Along the way. We lost people, families. We met in
hospital rooms, children whose names are written on my heart. And there wasn't a space to
talk about that either. There wasn't a space to say, I'm celebrating today and I'm grieving
someone else's loss at the same time. There wasn't a space to talk about survivor's guilt. That
is a very real thing. There wasn't a space to admit that sometimes joy can feel complicated, but
it is. Transplant is a miracle. Do not get me wrong, but it is born from loss and both can be true.
And this podcast holds a space for that. For the children we lost, for the families that are still
waiting for the ones navigating anniversaries and hospital hallways. We don't look away from
that here. We honor it. Let me tell you what this podcast will be. Between breaths is a place for
real stories. You'll hear from other transplant moms and dads. You'll hear from professionals
who understand this world beyond statistics. And sometimes, but mostly, it'll just be me talking
about the things that no one says out loud. The fear before clinical appointments, the weird
guilt when things are going well, the exhaustion that no one sees. If you are waiting, this space
is for you. If you are post-transplant, this space is for you. If you are grieving, this space is for
you. If your years out and still triggered by a hospital smell, this space is for you. We are not
alone in this, even when it feels like we are. So if you're listening right now and you're scared,
or you're tired or you're heartbroken, I see you. I see the two in the morning googling. I see the
brave face in front of your child. I see the quiet tears in hospital bathrooms. You are doing
more than you think you are. This is between breaths and I'm really glad you're here.