The Day Everything Changed: Revisiting Halle's Diagnosis and Finding Strength in Telling Her Story

When we launched the Strength Happens podcast through the Halle Grace Foundation, one of the goals we had in mind was to help others feel less alone. If sharing our story offers even one parent a glimmer of hope, or helps one medical professional better understand what it’s like on the other side of a diagnosis, then we’re doing what we set out to do.

The Foundation exists to support families, educate the medical community, and empower young people living with disabilities and/or chronic medical conditions. And part of that mission means telling the truth. Not the polished, clinical version of truth, but the raw, human one. The kind that lives in journal entries, unanswered questions, tangled wires, and the quiet hum of a feeding pump in the middle of the night.

That’s why we chose to share our first born's initial diagnosis story right at the start of the podcast. Because if you’re going to hear from us, you need to know where we’re coming from. You need to know the why behind the way we see the world, the urgency in our voices, the fire in our advocacy, and the deep compassion we carry for every family walking a road like ours.

Telling it, though? It was harder than I expected. Much harder. Especially this week. You see, in 2015, on July 3rd, Halle made the brave decision to enter hospice care. We were told she might have two months to two years left on this earth. We were told to go home and celebrate the Fourth of July, just in case it was her last holiday with us. And it was. She died two weeks later.

So as I revisited her beginnings to share them with you in this week's episode, I was also walking through her ending—something I do every July, but this year felt different.

I found myself back in those hospital rooms again—watching Halle struggle to breathe, watching John try to stay strong, walking hospital hallways whispering prayers I didn’t know how to say out loud. I remembered the sting of being dismissed as “just an anxious mom.” I remembered the helplessness of waiting on test results...of sleepless nights managing tube feedings...of holding Halle while she cried in pain.

Retelling the story of her first few months for our recording this week, cracked something open in me. It brought back trauma I had buried under years of coping. It made me relive moments I had protected myself from for a long time. And yet—I’m so glad I did.

Because inside all that pain is something else: purpose.

Telling Halle’s story isn’t just about honoring her memory (but I'm always glad I can). It’s also about connection. It’s about reaching that mom who just received her child's diagnosis. It’s about the dad who’s holding everything in because he thinks he has to. It’s about the young doctor who’s trying to do the right thing but hasn’t yet learned how much words can hurt—or heal.

Preparing for this podcast was hard. It hurt. But it was also healing.

Because when we speak our stories out loud, we take back the narrative. We create room for someone else to feel seen. And we remind ourselves: we survived.

Strength doesn’t always come from moving on. Sometimes it comes from going back, feeling it all again, and choosing to share it anyway.

If you’ve ever walked through something dark and wondered how you’d make it out—this week's episode of Strength Happens is for you. If you’ve ever needed a reminder that your instincts matter, that your grief is valid, that your tears have meaning—this is for you, too.

Thank you for holding space for my rambling reflections and for listening to our, especially this week. It was difficult to revisit those early months -- but it was important for our mission, and also for our healing. There is strength in the breaking. And there is purpose in the telling.

You can Listen NOW to Episode 2: Diagnosis Day of Strength Happens on Apple, Spotify, and Amazon. If you like what you hear, follow our show, like the episode, and drop us a comment or share it with a friend.

As we work to support families we are trying to develop resources for them - it is a slow process as we are just two moms finding our purpose. This week we are sharing a free download for parents with kids who like to frequent the doctors. We understand that we don't always remember everything we want to say to our kiddos' doctors and we sometimes feel so overwhelmed during the visit we forget the next step. The flyer below is a little tool I used when taking one of the Heilman trio to their many specialist appointments.

Doctor Visit Summary & Planning Sheet.pdf

Download PDF • 80KB