Refractory epilepsy, when seizures persist despite treatment, brings challenges that push you to the edge of what you believe you can handle. Over the past eleven days, we’ve lived in the thick of those challenges yet again, navigating a flood of breakthrough seizures that Hudson has faced. Through prayer and perseverance, we’ve clung to the promise that even in the fiercest storms, there is Light to guide the way.
Hudson’s “typical” days are often seizure-free, and those moments feel like BIG blessings. Recently, our family has been thrust into another chapter of relentless unpredictability. Hudson went from quiet, peaceful days to enduring clusters of five, ten, or even more seizures in a single day. Each one feels like a battle and not just against the seizures but against the helplessness that tries to creep in.
These are the days when normalcy feels like a distant memory. The last eleven days alone, there were three urgent calls to 911, a seemingly endless round of rescue medications, and a rushed trip to Iowa in search of answers. Every moment brought urgency, sleepless nights, and countless prayers whispered for mercy and healing.
Adjusting Hudson’s medications has been our lifeline—and also one of the heaviest burdens to bear. Every adjustment is an act of trust, a leap of faith. Will this one stabilize him? Will it bring side effects that ask even more of his little body? It feels like navigating a maze where the stakes are impossibly high. And though every change brings hope, the uncertainty can be as daunting as the seizures themselves.
When fear grows loud, we ground ourselves in God’s promises, trusting His hands are steady even when we feel like ours are shaking. The ripples of this storm don’t just stop with Hudson. They reach into every corner of our home, affecting schedules, siblings, relationships, and even the energy we need to simply get through. Life becomes a series of decisions, intense ones, layered with “what ifs.” What if we respond too quickly? What if it’s too much rescue medicine? What if we wait too long? Cluster seizures leave no time to breathe, no moments to second-guess, and that relentless pace can feel overwhelming.
But these trials have also taught us the value of leaning on others and trusting in God’s provision. Our support system has been an anchor in the midst of all this recent turbulence. The Sheffield Rescue Unit has shown up time after time with calm confidence and compassionate care. They are evidence of God’s grace in action, a reassuring reminder that we never face this fight alone.
And then there are the quiet champions who help keep our family running….our own moms. They have given selflessly, stepping in during long nights and early mornings to ensure Luke can continue working to provide financially while I focus on Hudson and Ayla. Their love is a reflection of Christ’s heart, steady and sacrificial. They’ve carried us when we couldn’t carry ourselves, reminding us that faith is lived out through service, love, and unwavering presence.
Even with the uncertainty hanging in the air, we choose to cling to hope—hope that brighter, calmer days are still ahead. This week begins another new chapter in Hudson’s treatment as he transitions off a bridge medication. We’ll meet with his doctors to determine the next steps and pray for wisdom to make the best choices. These meetings are not easy, filled with medical terms and difficult questions, but they’re also moments of possibility, opportunities for guidance and progress.
Our family’s road ahead is long, with no clear destination in sight. It’s a test of perseverance where each baby step feels huge. Through it all, we’ve learned to cherish the smallest victories; a seizure-free moment, Hudson’s warm laughter, or the fleeting peace of a night without living in survival-mode. We’ve felt God’s presence in each of these moments, reminding us of His constant care. Though the storms of refractory epilepsy may be fierce, our love for Hudson is stronger still. And with faith as our foundation, we find the gift of endurance to face each new day. This is teaching us the depth of God’s love not just through the big answers to prayer but in the quiet moments of grace and strength He gives us daily.
We don’t know what tomorrow holds, but we trust in the One who does. With faith, we’ll continue the fight for Hudson—praying for healing, leaning on love, and holding fast to hope that the best is yet to come.