“‘Your son will have severe developmental disabilities.’ Those words still echo in my mind, the ones we heard from a doctor we had only recently met, as our six-week-old son lay in a hospital bed next to us, hooked up to monitors. I was utterly crushed. Not just by the diagnosis itself, but by how it was delivered—cold, clinical, and final.
Six months before Isaiah was born, my brother Chase passed away. Losing him was an unimaginable heartbreak; he had been my best friend, my constant companion. Chase had disabilities, and to those who didn’t truly know him, they might have seemed ‘severe.’ But to me, he was incredible. He taught me lessons about love, patience, and strength every single day.
Just months before Isaiah’s birth, I had also left a nearly ten-year career in Special Education, where I taught and supported individuals with intellectual and developmental disabilities across multiple settings. My work had always been inspired by Chase—by the way he faced life and the joy he brought to everyone around him. And now, life had brought me full circle.
I had grown up with an extraordinary brother with disabilities, chosen a career to serve and support amazing individuals, and now—hearing that my own son might face medical complexities and developmental delays—this time it was personal. This time, the stakes were profoundly different, because it was my child.
Our older son, James, is just thirteen months older than Isaiah. All the plans I had imagined for them—the running, wrestling, playing side by side—shifted instantly. Their world would look different than I had once pictured. And yet, from the very start, one thing remained constant: the deep, unwavering love between my boys. Just as I had been the older sibling to Chase, James has stepped beautifully into that role. At only three years old, he shines as Isaiah’s protector and best friend. The love they share is fierce, tender, and unshakable. The picture of their life may not match my original vision, but it is still breathtakingly beautiful.
When the doctor delivered Isaiah’s grim diagnosis, we also faced the frustrating reality of dismissals and misunderstandings. Less than a week earlier, the same doctor had brushed off my concerns about unusual movements Isaiah was making. Having watched my brother struggle with seizures, my instincts told me these movements were seizures. I didn’t want to believe it—after all, newborns make strange movements—but my gut was rarely wrong.
Four days before Isaiah turned one month old, he had his first seizure. Several more followed, though they were hard to capture on video. Based on our descriptions, the doctor remained unconvinced, but thankfully she ordered an outpatient EEG quickly. The results confirmed our fears: Isaiah had a very abnormal brain wave pattern. The doctor, recognizing the severity of his condition, referred us to a Level 4 Epilepsy Center.
That center happened to be the same hospital where my brother had received leukemia treatments and eventually passed away. The place where doctors had done everything they could to save Chase was now where they would fight for Isaiah. Though I didn’t fully understand the significance of a specialized epilepsy center at first, I am so grateful we reached the right place quickly. The epileptologists and specialists we have worked with since have never limited Isaiah; instead, they continue to explore treatments and medications to stop or at least reduce his seizures, calming his chaotic brain as much as possible.
A few months later, Isaiah was diagnosed with Infantile Spasms, a rare and catastrophic form of childhood epilepsy. Hearing the word ‘catastrophic’ in relation to your child is gut-wrenching. Watching him endure seizure after seizure, knowing there is nothing physically you can do to stop them, and understanding the damage these spasms inflict on his developing brain—it is heartbreak unlike any other.
Isaiah is still so young and cannot fully understand or articulate what is happening to him, yet he is unbelievably strong. His courage gives me courage. His determination and spirit mirror the same qualities I saw in Chase. It feels like a piece of my brother lives in him—a spark of resilience, of heart, of hope. I couldn’t love it more.
Despite our efforts, controlling Isaiah’s spasms and chaotic brain wave patterns has been incredibly difficult. He has endured twice-daily injections for nearly four months, six additional seizure medications, and the ketogenic diet. There have been brief periods of fewer spasms, but full control has eluded us. The reality is harsh, and it stings, but we keep moving forward.
Isaiah’s medical needs are extensive. In less than two years, he has had thirteen hospital stays, twenty-one EEGs, five ambulance rides, countless ER visits, and more appointments than I can count. He has spent holidays and special moments in the hospital, including James’ second birthday. He is completely tube-fed, unable to swallow safely, and at nearly two years old, he cannot hold his head up independently. He has severe muscle weakness, limited mobility, and a visual impairment due to neurological challenges. And despite countless tests, we still don’t have a definitive genetic diagnosis. Isaiah is one of a kind.
Yet none of these diagnoses or limitations define him. Each skill he masters, no matter how small, is a victory worth celebrating. He teaches us resilience, patience, and hope as he grows. Recently, he experienced standing in a stander for the first time—a moment of joy, independence, and a new perspective. Seeing the pure happiness on his face reminded us that he deserves every experience and every opportunity to explore his world.
My two boys are incredible in their own unique ways. James and Isaiah have different abilities, needs, and challenges, but they are both worthy of celebration. James is learning to advocate for Isaiah, understanding the importance of being his voice. I hope this bond strengthens as they grow.
This journey is not without fear and heartbreak. We have faced uncontrolled seizures lasting hours, respiratory events, and other medical mysteries that leave us on edge. But alongside these challenges are countless unforgettable moments: smiles, eye contact, expressive eyebrows, and small steps forward. Each one reminds us of the beauty that exists even in hardship.
God’s plans for Isaiah are greater than we can imagine. He teaches me lessons I could never anticipate. I strive to mirror his resilience and determination, to be his voice, his advocate, and his biggest fan. Through it all, we hope to spread joy, raise awareness about epilepsy, and inspire others facing similar journeys.
If you are walking a path like ours, know this: you are stronger than you realize. Trust your instincts, speak up, and have faith. This journey is scary, yes, but it is also filled with moments of incredible beauty, hope, and love.”
