What a week it has been.
We arrived in Austin late Tuesday afternoon, but the journey was far from smooth. Lane was already in acute respiratory distress, struggling to breathe, each gasp a sharp reminder of how fragile his body can be. The drive itself was a challenge. Every mile seemed to stretch longer as I gripped the steering wheel, watching him struggle in the passenger seat. He was pale, limp at times, and his little chest heaved with each breath. My heart raced with fear that this could spiral into something we couldn’t handle.
We made it to the hospital, barely. Once inside, he was admitted straight to the ICU. The staff moved quickly, taking over what we could no longer manage on our own. Monitors, oxygen lines, IVs, and constant vitals checks became our world. We stayed there until discharge yesterday, each day blending into the next, punctuated by alarms, whispered conversations with doctors, and the occasional brief moments of calm when Lane would manage a small smile.
When we left the hospital, we carried with us positive pressure support for nightly use. It’s not a cure, but it gives him a chance to breathe while he sleeps, and that’s something we cling to in these moments of uncertainty.
It turns out Lane is positive for rhinovirus, the common cold that somehow turns into a formidable opponent for children like him. Kids with complex medical histories—especially cardiac children—can be hit extremely hard, but this time it seems as though the virus has been relentless. It’s not just a cold; it’s a storm battering a body already stretched to its limits.
On the drive home, things took a terrifying turn. Lane began vomiting uncontrollably, his body going limp in my arms. My hands gripped the steering wheel and my heart sank. I knew I had to call 911. EMS arrived quickly, moving him from the car. His tiny body was tachycardic and limp, barely responsive. I held my breath as they laid him flat, and then, slowly, almost miraculously, he began to perk up. His vitals stabilized, his eyes opened. That moment, brief as it was, confirmed what we already knew: Lane’s intracranial pressures are not stable. Being upright places tremendous stress on his body. Even a short drive or a simple walk can feel like a mountain he has to climb.
This week has been a painful reminder of how far we’ve come from thinking of the hospital as a place that “fixes” things. We don’t go there for cures anymore. We are signed on to hospice care, and we are confident in that decision. Hospitals are now our support, a place to help manage crises like respiratory viruses, not a place to erase the larger reality of his condition.
Even with that acceptance, the fear never fully leaves. We’re home now, but Lane’s lungs are still not clear. He struggles to breathe, and every cough, every wheeze, every tiny shift in his expression makes my chest tighten. I don’t know if he’s out of the woods. My heart aches with every shallow breath he takes. The nights are long, the days a mixture of hope and worry. I find myself counting each rise and fall of his chest, measuring each second for signs of stability.
Tomorrow, we leave for our Make-A-Wish trip. A trip meant to bring joy, to create memories and laughter, arrives at a time that feels impossible. His body is weary. His lungs still battle infection. And yet, this is a chance for him to smile, to feel the wonder of a world beyond monitors and medications, even if just for a brief moment. The timing couldn’t be worse, and yet, it couldn’t be more meaningful. We cling to this chance as tightly as we cling to each other, to the precious moments we still have.
Through it all, I think about the paradox of life with a child like Lane. Every day is filled with both terror and tenderness. There is heartbreak in the knowledge that each crisis could be the one that breaks us. And yet, there is beauty in the little victories: the small laugh, the way he turns his head to see us, the quiet moment when he rests peacefully in my arms. These moments feel miraculous, but they are also painfully fleeting, reminders of the fragility and resilience intertwined in his tiny body.
The support of family, friends, and strangers has been a lifeline. Every prayer, every message of encouragement, every thought sent our way adds a little strength to carry forward. Yet, in the quiet moments, the weight of this journey presses down with a force that is impossible to articulate.
As I write this, I think about tomorrow’s trip. We’ll travel with hope, with fear, with a thousand what-ifs wrapped around our hearts. Lane may smile, he may laugh, he may see something new that fills him with wonder. Or he may struggle to breathe through it all. Either way, we’ll be there, holding his hand, guiding him, cherishing every heartbeat, every precious second.
This week has been a storm. It has tested our courage, our faith, and our endurance. And yet, through it all, Lane reminds us why we fight, why we hope, and why love is the thread that holds us together when the world feels impossible.
Please, hold us in your prayers as we take this next step. For Lane, for the laughter and the tears yet to come, and for the strength to face each new day.
