Lane’s Story: A Week of Fear, Faith, and Fragile Hope

What a week it has been. Some days feel like an eternity, and this one stretched our hearts to the very limit.

We arrived in Austin on Tuesday afternoon, after a long drive that nearly didn’t happen. Lane was struggling badly with acute respiratory distress. Every mile felt like forever, and every sound he made left us holding our breath, wondering if we would even make it. By the time we pulled into the hospital, we knew there was no more room for hesitation. We were rushed to the ICU, where Lane would stay until discharge yesterday.

In those hours, it felt like we lived through years of fear and waiting. Watching your child fight for each breath is something no parent should ever have to witness. Yet here we were again, caught between hope and heartbreak, holding onto Lane’s hand, whispering prayers, and waiting for monitors to tell us whether he would stabilize.

When we finally left the hospital, it was with new instructions and more medical equipment to bring home with us—positive pressure support, now required nightly. Lane is positive for rhinovirus. For most kids, it’s nothing more than a bad cold. But for medically complex kids—especially those with cardiac complications—this virus can be devastating. For Lane, this particular hit felt far heavier than usual. Rhinovirus might be common, but in his fragile body, it carries a weight that most people can’t imagine.

The drive home was supposed to be a relief. Instead, it turned into one of the scariest moments we’ve had yet. Halfway back, Lane began vomiting uncontrollably. His small body went limp. His eyes fluttered, and panic filled every corner of the car. I grabbed the phone and called 911, my voice shaking as I tried to keep calm. By the time EMS met us, Lane was tachycardic, unresponsive, and terrifyingly still. They pulled him from the car, laid him flat, and suddenly—he perked up. His vitals stabilized.

That one moment told us what we already knew but were desperate not to face: Lane’s intracranial pressures are unstable. The act of sitting upright puts immense stress on his body, forcing his fragile systems into chaos. Watching him come back from that limp, lifeless state was both a relief and a sobering reminder of how precarious this journey really is.

And here’s the truth we live with every day—when we go to the hospital now, it is no longer about “fixing” Lane. We know his condition. We know his body carries battles it cannot fully win. We are signed on with hospice care, and though that decision was heart-wrenching, we are confident it was the right one. The hospital is no longer a place where we go for solutions, but for support when respiratory viruses and other complications overwhelm his fragile body.

That reality doesn’t make it easier. Every trip to the hospital feels like another reminder that time is precious, that moments at home are not guaranteed.

We are home again now, but Lane is far from being out of the woods. His lungs remain unclear. He’s still struggling, fighting with each breath, carrying the weight of exhaustion that no child should ever bear. We spend our days watching over him, listening to every sound, scanning every movement, wondering when the next crisis will come. It’s a kind of vigilance that is draining, but one that love makes necessary.

And tomorrow, we are supposed to leave for his Make-A-Wish trip. A trip that has been months in the planning, a gift of joy and memory-making. The timing couldn’t feel worse. His body is fragile, and every instinct in me wants to protect him, keep him safe, shield him from anything that might tip him into another crisis. But at the same time, this trip is about living, about creating moments beyond hospitals, monitors, and medical reports. It is about giving Lane joy, no matter how much or how little time we are blessed with.

So we sit in the tension of fear and hope. Fear, because tomorrow feels impossible. Hope, because Lane deserves this joy, and we are praying that his body finds the strength to carry him through it.

As I write this, I think about the balance we’ve been forced to learn—the balance between letting go and holding on. Between medical reality and faith. Between the pain of watching your child struggle and the fierce joy of celebrating the moments when he smiles, laughs, or simply breathes steadily.

There is no roadmap for this. Each day comes with its own storm. Some days, like today, feel heavier than we can bear. And yet, in the middle of the fear and exhaustion, we still find love. We still find moments of grace. We still find the courage to hope for a miracle, no matter how small.

Lane teaches us that life, even fragile and uncertain, is still life worth celebrating. Every day he is here is a day we will cherish, no matter how hard.

Please, keep Lane in your prayers. Pray for strength in his lungs, stability in his pressures, and peace in his little body. Pray that tomorrow brings joy instead of struggle, that our Make-A-Wish trip becomes a memory of laughter and love, not more fear.

We know God holds the plan. We know He is in the details, even when the details break us. And we believe that somehow, some way, Lane will be carried through this, whether by healing, by hope, or by the immeasurable love that surrounds him.

This week has shown us once again just how fragile everything is, but also how powerful love and faith can be. Lane may be struggling, but he is still here. Still fighting. Still our miracle.

And that is reason enough to keep going. 💛